6 Life-Saving Reminders From Parliament's ADHD & Autism Debate
Amongst national newspaper articles mocking ADHD as 'Attention-Seeking Disorder', on 6th February 2023, Parliament held a debate on ADHD & Autism support in the UK.
Confessing your deepest insecurities to a stranger, the ways in which you've always felt weird, or broken, or not good enough, is not fun. This stranger holds the keys to make or break your life: they can tell you whether your suffering amounts to a neurodevelopmental condition granting you access to support, validation, and hope for a slightly less painful future.
Accessing support for ADHD or Autism isn't like getting a new haircut - it's demoralising, degrading, and difficult. To have these experiences ripped apart in the public arena can feel like further reasons to invalidate yourself, to mask who you really are, and avoid seeking help.
This Parliamentary debate can validate millions of people drowning in the cripplingly bureaucratic, broken myriad of neurodiversity 'support' in the UK. In a world becoming increasingly divisive, including in politics, this debate showed it is possible to work together for common causes. Change is possible. Even if these issues won't be solved overnight, they are being discussed in the place where laws are made.
Parliamentary debates don't make as exciting a story as ripping apart celebrities and the people desperately seeking support, but you can choose where to place your attention. If you're feeling powerless, I hope you chose to return here.
Here's some comments from the debate as reminders that...
1) You are not broken:
'We are denying our businesses and public services the talent of neurodiverse individuals, which is of course having an effect on UK plc.' - Paul Bristow
'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.' - Alex Sobel
'Diagnosis is often delayed by years because girls and women are highly likely to be misdiagnosed with a mood disorder such as depression, bipolar disorder or anxiety disorders. Both autism and ADHD are often viewed through the lens of mental health, but they are not at root mental health issues. The brain is literally wired differently. It is neurodevelopmental.' - Margaret Ferrier
'There are some shocking statistics about the sheer lack of neurodiverse people in the UK workforce. That is nothing to do with people receiving a diagnosis; it has everything to do with the fact that we are wasting that opportunity....this is a complete waste of opportunity and talent, and we are wasting the lives of people with these waiting lists.' - Elliot Colburn
'ADHD is not a mental health condition, it does have close links to mental health conditions. Those who do not receive support are more vulnerable to trauma, which can trigger depression. Adults with ADHD are 5 times more likely to take their own lives than those without it.' - Elliot Colbourn
'One of the limitations of CAMHS is that mental health issues such as anxiety and depression are bundled together with neurodiversity diagnoses. While there is sometimes an overlap between the two, they are, in fact, distinct areas.' - Laura Farris.
'Although awareness has increased and a lot more people—especially women—are openly talking about ADHD and seeking a diagnosis, there remain severe delays and barriers to diagnosis and treatment for ADHD in the UK today. That is leaving people in limbo and in need of support, and means that enormous untapped potential is restricted and hidden away. We need education in society, and the acceptance of people with ADHD and autism, to ensure that people with those neurodiverse conditions are able to flourish and live to their full potential.' - Bambos Charalambous
2) You are not the problem:
'ADHD and Autism Assessment times are simply not fit for purpose.' - Elliot Colburn
'There is clearly a systematic failure at the heart of ADHD and autism diagnoses. Millions of neurodiverse people are left undiagnosed and wait years to be assessed. Training on and awareness of ADHD and autism are lacking, resulting in misdiagnoses and inadequate support post diagnosis. For some, support is almost non-existent. The repercussions of inadequate and delayed support for those with ADHD are deadly.' - Elliot Colburn
'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.' - Alex Sobel
'We would not accept a five-year wait for a physical condition, so we should not accept it for ADHD. We certainly would not close our doors altogether to new referrals in that case. Surely refusing to see patients or assess them for specific conditions is discrimination. It is certainly against the founding principles of the NHS.' - Justin Madders .
'For ADHD assessments, there is no NHS waiting time standard. How can it be right that we have no idea of the number of people waiting for assessment? Without routinely published figures, we cannot get a handle on the scale of the issue' - Dr Rosena Allin-Khan
'The ratio of educational psychologists (required for EHCPs) covering the Cheshire West and Chester area was 1 for every 5,822 children and young people.' - Justin Madders
'When parents go through the complaints process, go to the ombudsman or go to a tribunal, the data is clear: between 90% and 100% of cases are found in the parents’ favour. It is clearly a systematic failure.' - Elliot Colburn
'GPs and teachers hold the responsibility, in essence, for being gatekeepers to assessments, but there are significant issues with training and awareness.' - Elliot Colburn
'West Berkshire CAMHS said... that schools erroneously say that they cannot help until there is a diagnosis, although in fact they can on the presentation of need.' - Laura Farris
'A misdiagnosis meant that Alexis was locked inside in-patient mental health settings for three years. Eventually, she had to flee the country to get help. It is inhumane that autistic people can end up detained in inappropriate settings because they are incorrectly diagnosed... her evidence cut to the core of how patients are being failed and why the Government must act.' - Dr Rosena Allin-Khan
'The hon. Member is absolutely right: getting the resources after a diagnosis has been made is affected by which school the child is at and what resources it has available to provide the support needed.' - Bambos Charalambous
3) You are not 'attention-seeking':
'I am slightly worried that we are seeing a bit of push-back, with people saying it is fashionable to have ADHD because a number of celebrities have come out and said that they have it, and almost casting doubt on the diagnosis behind that. We have heard people’s stories about how much they have gone through, wondering what is wrong with them or why they do not fit into society, and about the obstacles that they had to get through to get a diagnosis, so no one should say that this is something people do just on a whim, because they want to look cool. It is unfortunate that people say that.' - Kerry McCarthy
'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.' - Alex Sobel
'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.' - Alex Sobel
'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.' - Siobhan Baillie
'The [peope] 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.' - Siobhan Baillie
'Many more slip through and are completely missed by GPs and teachers or are rejected from being referred prior to assessment... [believed to be] approximately 46% of all cases.' - Elliot Colburn
4) You are not alone:
'Although 1 in 20 adults is believed to have ADHD, only 120,000 have had a formal diagnosis. here are many reasons for that. One is stigma, which manifests itself in many different ways, not least in societal attitudes to ADHD and the misconception that it affects only boys and young men.' - Bambos Charalambous
'In the last five years, the number of people being treated for ADHD has risen by 80%. Currently, one third of adults awaiting assessment have been waiting for longer than 13 months.' - Matt Vickers
'The ADHD Foundation Neurodiversity Charity suggests there has been a 400% increase in the number of adults seeking a diagnosis nationally.' - James Madder
'Every Member of Parliament will be able to tell us about how parents feel they have to fight every step of the way just to get a referral. Then they have to fight to get adjustments in the school and seem to have a constant battle to ensure those provisions are maintained.' - James Madder
'I find it surprising that the experience of every single parent seems to be the same, irrespective of whether the child is still in mainstream school.' - Laura Farris
Research by the Autism Society shows that the waiting list for autism assessment has grown by nearly 40%. There are over 700,000 autistic adults and children in the UK, with around 120,000 people waiting for an assessment in England alone.
Despite guidelines from the National Institute for Health and Care Excellence stating that no one should have to wait longer than three months between referral and first being seen, more than 100,000 people have waited longer than that.
The Petitions Committee team conducted a survey to ask petitioners to share more about their experiences of autism and ADHD assessments, which received over 7,000 responses in a few days. 34% of respondents said they've waited between 1-3 years for an ADHD assessment, with 43% of adults and 47% of children waiting between 1-3 years for an autism assessment.
'There is a lack of understanding about what ADHD actually is, how it affects people and how it can be treated. The best example is the common stereotype that those with ADHD are all hyperactive. That is a common misconception; only about 15% of patients diagnosed with ADHD have hyperactive tendencies.' - Elliot Colbourn
5) You are not 'making it up':
'Jess, a co-creator of the petitions, described the process as “antagonistic” and said it was “almost like the parents are on trial”. - Elliot Colburn
'Many parents have also described the questions asked during the assessment process as a box-ticking exercise that played heavily on stereotypes about autism and ADHD. An example I was given by another witness I spoke to included a question asking the patient if they liked to put things in order.' - Elliot Colburn
'Two of the three cases brought to my attention feature quite strongly a resistance to making the diagnosis of ADHD, even though in these cases they were absolutely convinced that this was the answer. All sorts of reasons are found, including a lot of misinformation, for not making what we think is the correct diagnosis. The unwillingness to give a diagnosis impacts on people’s ability to get on with their lives.' - Bambos Charalambous
'Young women and girls in particular are likely to be underdiagnosed, with a male-to-female ratio of 3:1. The misconception that ADHD is exclusive to hyperactive young boys is rife, and is another contributing factor to the failure to assess ADHD properly and in time.' - Elliot Colbourn
'School-age girls might be dubbed daydreamers. School reports have comments such as, “Bright, but needs to apply herself better”, “Clever, but makes silly mistakes”, or, “Needs to stop chatting”. It is often dismissed as just that: “She needs to try a bit harder, concentrate a bit better”, but rarely is it looked at any closer. That constant over-thinking, never-ending activity in the brain as they start to get older often starts to spark secondary symptoms or conditions. That is where the misdiagnoses of depression, anxiety and more come in. They are treated for the secondary symptoms that are much more easily identified, but unfortunately rather ineffectively. If someone is not looking at the underlying cause, it is just plastering over the cracks.' - Margaret Ferrier
6) There is hope:
'In the proposed Scottish Government Bill, the SNP will pledge to create a learning disability, autism and neurodiversity commissioner, yet the UK Government have no plans for an equivalent position here in England... I do not think that is good enough. There are similar roles in other countries, such as the health and disability commissioner in New Zealand and the mayoral office for people with disabilities in New York. I urge the UK Government to take urgent action and give those with neurodevelopmental disorders the attention and legislative commitments that they truly and rightly deserve.' - Steven Bonnar
'The Scottish Government are currently actively recruiting neurodivergent people to take part in a panel that will help to design an inclusive consultation for the proposed new Bill. That is how real, effective policy should be made: through engaging with those persons who are most affected in their day-to-day lives.' - Steven Bonnar
'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.' - Siobhan Baillie
'I have a message for those who are experiencing the challenges of getting a diagnosis or an EHCP to get their child to the right school: with the help of the right people, a positive outcome is possible. Your child could even end up completing a master’s degree at university—with a distinction, no less.' - Mark Eastwood
'48 neurodiversity support managers have been appointed in our prison system, with more to come, to screen and identify people with neurodivergent conditions.' - Bambos Charalambous
'One thing that we can perhaps do with this debate is encourage faster diagnosis so that we can help to meet that need and ensure that, where specialist support is needed, it is provided' - Robin Walker
'The unwillingness to give a diagnosis impacts on people’s ability to get on with their lives, which also needs to be addressed. ' - Bambos Charalambous
'ADHD is under-diagnosed in women and girls... because the symptoms and signs are very different in girls as opposed to boys and men. We are looking at that in the women’s health strategy. We see a number of young women taking their own lives because they have not been diagnosed in time and given the support they need. That is a priority area for the Government.' Maria Caulfield
'Questions have to be asked of local service providers. What more could they do? For example, could weekend working or evening assessments help to clear the unacceptable backlogs?' - Peter Gibson
'The National Autistic Society estimated that 99.5% of the public is now aware of autism. Funding is going in like never before, including over £74 million to the autism strategy. Specifically on autism diagnosis, £2.5 million has gone in in the last year to improve autism diagnostic pathways, but it is about how that money is spent and whether it is making a difference. We are putting in more funding, because the issue is significant.' - Maria Caulfield
'Although the data is there, it is not pooled together at a regional or national level, and I gave a commitment in that debate that we would look at a data dashboard so that, for ADHD, we can start to piece together who is waiting, where and for what.' - Maria Caulfield
'NHS England has developed a framework that is transforming learning from autism and ADHD pilot schemes into scalable action, which will improve support and care for people across the country.' - Maria Caulfield
'We want leads at every single local integrated care board to be the lead person to whom MPs can go if assessments are not being done on time, to hold local services to account, to compare best practice and to make sure it is happening in every part of the country. We are putting in the investment needed to meet the demand, because further investment will be needed. This year, we have committed an extra £2.5 million to the scheme, which will help roll it out further.' - Maria Caulfield
'We have heard from people with ADHD how transformative a diagnosis can be—the difference it can make to their lives and the sense it brings to some of the issues they have been struggling with, possibly for many years. That shows the importance of putting investment into diagnosis, to ensure that everyone gets opportunities to fulfil their potential. The waiting times we are talking about—five years, in some cases—are cruel and inhumane.' - Justin Madders
Watch: ADHD Works x BBC World News, here
If you know someone who's struggling, please share this with them to remind them that they are not alone. Their experiences matter. There are people in power who care, and who are trying to do something about it. There is hope.
ADHD Works offers ADHD coaching, training & resources to help people make ADHD work for them. Find out more here.