On Monday 6 February this year, following pressure from campaigners and two petitions on autism and ADHD assessment delays, which amassed over 30,000 signatures, one calling for an increase in funding and review of ADHD assessments, the other calling for an emergency fund for autism and ADHD assessments, 29 MPs joined a government debate in Westminster Hall  autism and ADHD assessment delays. We have summarised some the main points. 

In July 2022 (the latest data available) there were just over 125,000 people waiting for a clinical autism assessment, with the majority (85%) waiting for 13 weeks or more. There is no NHS waiting time standard for ADHD assessments which means that waiting times do not have to be measured and reported. As a result, waiting times for ADHD assessments are not routinely published. A waiting time standard isn’t recommended by the National Instititue for Health and Care Excellence (NICE)  and this has been backed by the Government. 

Being assessed for ADHD or autism should not be a privilege for only the rich and famous. 

– Leanne Maskell – an ADHD coach at ADHD and author of the new book ADHD an A-Z: Figuring it Out Step by Step

The deate was led by Elliot Colburn, Conservative MP for Carshalton and Wallington, who opened by reading out the details of the two petitions.

Petition 589677 reads:

“The Government should create an emergency fund to deal with the massive waiting lists for autism & ADHD assessments for children AND adults. This would provide resources for local health services to deal with current waiting lists and new patients.”

It received over 21,000 signatures, including 29 from my Carshalton and Wallington constituency.

Petition 597840 reads:

“The Government should commission a review of how Attention Deficit and Hyperactivity Disorder (ADHD) assessments are managed by the NHS, including through Shared Care Agreements, and increase funding to reduce waiting times.”

The petition reached over 10,500 signatures.

He mentioned that although neither petition reached the usual 100,000-signature threshold for a debate, the Petitions Committee felt that the issue was an important topic for discussion.

Unacceptable’ waiting times for assessment

Elliot Colburn MP opened by sharing the experiences of his constituents with long waits and often inadequate assessments, regarding EHCPs for children, and concluding that “assessment times are simply not fit for purpose.”

Kim Leadbeater MP (Batley and Spen) (Lab) agreed that ‘parents are finding waiting times for a diagnosis painfully long.18 months, 2 years, and longer” She referenced the ‘many wasted years of education’ this caused for many children, leaving them ‘in danger of falling behind their peers’ and being ‘set up to fail’, and called for diagnosis within weeks, not years.

Elliot Colburn MP agreed and added, “this is a complete waste of opportunity and talent, referring to a discussion with television and radio presenter, Melanie Sykes, who he said highlighted that this a wasted opportunity, wasted talent, and it is wasting young people’s lives with these waiting lists.

Paul Bristow (Peterborough) (Con) further added “delays in diagnosis for autism and other neurodiverse conditions are having an impact on young people and families but, more than that, it is having an impact on UK plc. We are denying our businesses and public services the talent of neurodiverse individuals, which is of course having an effect on UK plc”.

James Sunderland (Bracknell) (Con) pointed out that “waiting times are causes havoc everywhere, but people cannot necessarily get medication or treatment for a particular condition until it has been diagnosed.”

My daughter has been waiting almost 4.5 years for an NHS ASD assessment. In this time, she has spent 1.5 years out of school, 6 months being unable to leave the house, had no social life, had severe anxiety, is depressed and had suicidal feelings.

– A respondent to the Petitions Committee Survey 

Elliot Colburn MP agreed, “the delay in diagnosis also means delays in treatment.” He added that evidence suggests ADHD as a neurodiverse condition is vastly underdiagnosed and currently affects over 3 million people in the UK.

Caroline Nokes (Romsey and Southampton North) (Con) pointed out that the problem isn’t “just about delays and lack of proper diagnosis”, but “about women and girls being less likely to be diagnosed than their male peers.”

Margaret Ferrier (Rutherglen and Hamilton West) (Ind) said, “Attention deficit and hyperactivity disorder and autism are chronically underdiagnosed and misdiagnosed in women and girls,” Primarily due to the conditions presenting differently that in makes and women and girls developing and adopting techniques to hide the conditions to avoid being stigmatised and to feel accepted.

Elliot Colburn MP raised the point that “there is a lack of understanding about what ADHD actually is, how it affects people and how it can be treated.”

He added that there “is a common misconception; only about 15% of patients diagnosed with ADHD have hyperactive tendencies”. He said, “GPs and teachers hold the responsibility, in essence, for being gatekeepers to assessments, but there are significant issues with training and awareness.” He added that, “the single biggest issue I have had feedback on from those who have briefed me is the complete lack of data on ADHD care.”

When speaking to the charity, ADHD UK before the debate, he asked them about the national data on assessment waiting times  and the number of individuals diagnosed, and the answer he got was, “We don’t know,”—or, at least, the NHS and the Government do not know.” He added that the Government, do not collect national data, and it is therefore “hard to have true oversight of the state of waiting times for ADHD assessments in the UK.”

“Based on the data available to us and the anecdotal evidence shared with us by those who have gone through the system, we know that ADHD waiting times are indeed in a poor state, “ he stated.

He said the official figures for the average adult assessment waiting times were as follows:

• around six months in Scotland
• 1 year in England
• 2 years in Wales
• 4 years in Northern Ireland

Mark Eastwood (Dewsbury) (Con) commented that regarding waiting times, the “problem is compounded by the time it can take to get EHCPs from local councils, which can lead to further waiting times on top of that.”

Elliot Colburn MP replied that there is a clear systematic failure in accessing EHCPs, and he says that the “data is clear”, that  “between 90% and 100% of cases that go to the ombudsman or go to a tribunal are found in the parents’ favour.

It is clearly a systematic failure.

– Elliot Colburn

He said the official figures for the average child assessment waiting times were as follows:

• 7 months in England and Scotland
• 6 years in Wales
• No data for Northern Ireland

Many of the MPs taking part in the debate described a very different reality to the official figures. Responses to the Petitions Committee survey from parents and guardians of children with ADHD diagnosis confirmed:

• 17% said that their child had to wait between six months and a year for an assessment
• 28% had to wait between one and two years
• 21% had waited between two and three years
• 7% said that their child had waited for more than five years

He added that the “real-life implications of inadequate and late ADHD diagnoses are really quite harrowing.” And gave real-life examples where delays in assessment proved fatal. “And despite ADHD not being a mental health condition, adults with ADHD are five times more likely to take their own lives than those without.”

He stated that “Although the state of play for autism diagnosis is a lot clearer, the outlook is no less bleak.

• over 120,000 people are waiting for an autism assessment in England alone
• more than 100,000 have waited longer than the three-months
• long delays risk people’s needs escalating and autistic people falling into crisis

43% of adults and 47% of children have been waiting for between one and three years for an NHS autism assessment.

The Petitions Committee survey echoed that, finding that 43% of adults and 47% of children have been waiting for between one and three years for an NHS autism assessment, despite NICE guidelines stating that no one should have to wait longer than three months between referral and first being seen.

“As with ADHD, long delays risk people’s needs escalating and autistic people falling into crisis unnecessarily. That ultimately ends up putting more pressure and costs on other services, including mental health services,” he added.

John Howell (Henley) (Con) shared his own experience, “My postbag has been full of people writing in with examples of how their child has suffered from a late diagnosis of autism.”

Elliot Colburn MP  referred to a meeting with Jessica, co-creator of the petition calling for action to reduce ADHD and autism assessment waiting times. She described the  referral consultation and assessment process as “antagonistic” and “almost like the parents are on trial”.

He added that many parents described the same “process as a box-ticking exercise that played heavily on stereotypes about autism and ADHD.”

Mark Eastwood (Dewsbury) (Con) raised the need for “better training for people involved in those professional services, including in child and adolescent mental health services and in the councils, for EHCPs”

Elliot Colburn MP agreed that “more and better training is definitely needed.”

He added that there is often a focus on anxious behaviours and when these are not on display, people being accessed are “unlikely to get a diagnosis.”

In the national autism strategy, published in 21 July 2021, the Government promised:

“By the end of the strategy – by 2026″

• demonstrable progress on reducing diagnosis waiting times and improving diagnostic pathways for children, young people and adults”.

He summerised:

• There is a clear 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

On diagnosis and appropriate support

“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.”

He added that the, “the impact of the delay cannot be overstated.”

The long-term effects of untreated ADHD are documented and included:

• increased rates of other health problems
• poor social functioning and antisocial behaviour

For example, those with ADHD are:

• twice as likely not to take up full-time employment

24% of the prison population has ADHD.

– Elliot Colburn 

It is also estimated that 24% of the prison population has ADHD, so intervention and diagnosis of ADHD would clearly improve the life chances of people with ADHD who fall into the criminal justice system. 

Mark Eastwood said it was a postcode lottery regarding the school system when it comes to looking after special educational needs. 

Dr Rosena Allin-Khan (Tooting) (Lab)  said, “it is alarming that there is a real divide based on where someone lives, how much money they have and their ability to access private care.”

Bambos Charalambous (Enfield, Southgate) (Lab), agreed that, “getting the resources after a diagnosis is affected by which school the child is at and what resources it has available to provide the support needed.”

He highlighted the problem that, “there is no NHS waiting time standard for ADHD assessment, which means that waiting times are not measured and reported.”

– Peter Gibson 

Peter Gibson (Darlington) (Con) about the many correspondences he has received regarding issues with assessments for autism and ADHD. He added, “We must do more to improve the speed of the assessments and improve our guidance to parents on the support and help available when a diagnosis is given.  From the many conversations that I have had on this issue, I know that families feel alone and are often unaware of the full range of support that is available to them, either pre or post diagnosis. 

He reiterated that the petitions were calling for more funding, but added that the issue cannot be fixed by money alone. “There are insufficient numbers in training, and recruitment to these challenging roles is not sufficient.”

He added that he welcome the recently published review of special educational needs and disabilities. He also spoke of the benefits of collating and collecting data “regarding the number of teachers and teaching assistants in each constituency who have undergone autism-related training.” He also supported holding data on teacher who have received specialist ADHD training. 

Steven Bonnar (Coatbridge, Chryston and Bellshill) (SNP) spoke of the Scottish Government’s committee to delivering a learning disability, autism and neurodiversity Bill, and fully supported the Scottish Government’s recruitment drive to get neurodivergent people to take part in a panel that will help to design an inclusive consultation for the proposed new Bill.

Real, effective policy should be made: through engaging with those persons who are most affected in their day-to-day lives.

– Steven Bonnar

He added, “the Scottish Government have allocated £46 million to improve the delivery of mental health and psychological services, including CAMHS, psychological therapies, treatment for eating disorders, and neurodevelopmental services. A report by the National Autistic Society Scotland and Scottish Autism found that 96% of people surveyed support the introduction of the Bill both to promote and to protect the rights of autistic people.”

He said, “in order to promote instrumental change, the UK Government must invest in early diagnosis and mental health support, and follow the lead of the Scottish Government with the introduction of a new Bill.” 

Mrs Flick Drummond (Meon Valley) (Con) said, “As we have heard, we do not identify autism quickly enough at any stage in life, despite the increased awareness of and focus on autism in recent decades.”

On EHCPS

Another related issue that came up many times during the debate was Education and Health Care Plans (EHCPs) for children who needed them.

Mrs Drummond, (MP for Meon Valley) (Con), recognised that “the process of getting an EHCP for any condition can be long and difficult. Autistic children often struggle in mainstream education settings and specialised support is important. We must ensure that this area is properly resourced.”

She added, “I know from my own casework and research that the process of getting an EHCP for any condition can be long and difficult”.

We need support for autistic children and autistic people generally so that society does not lose their potential and value, which would be much missed.

– Mrs Drummond

Alex Sobel (Leeds North West) (Lab/Co-op) focused on ADHD, reiterating that there was no NHS waiting time standard for ADHD assessment and that it is not generally measured and reported, so anecdotal evidence is used instead.

He added that, “people with ADHD are often stigmatised”, and despite evidence, including neuroimaging studies, some people still deny its existence.  

Sir Robert Buckland (South Swindon) (Con) said there were 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”.

Mark Eastwood (Dewsbury) (Con) said, ” An EHCP should be completed in 20 weeks. That is rarely the case, although it depends which council is involved. I am not making this issue political; some of these are Labour councils and they are doing better than us. I might be going out of scope, but the point I am trying to make is that, given the waits for assessments and EHCPs, children and families can wait three years or more to get the complete support that they need, and they definitely need it.”

He mentioned 

• total high-needs budget of £9.7 billion announced in July 2022 has been increased by £400 million to £10.1 billion 
• £325 million allocated for 2022-23 under the schools supplementary grant

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

Kerry McCarthy (Bristol East) (Lab) said, “Parents who come to us because they are struggling to get EHCPs really are at their wits’ end because of all the obstacles and the number of times they get pushed back by the system, particularly when they are suspected of being over-anxious parents.”

She also highlighted that a quarter of the prison population meets the threshold for an ADHD diagnosis, and up to 19% may be autistic.

Justin Madders (Ellesmere Port and Neston) (Lab) talk about his constituent’s experience of delays in receiving an ECHP, and when he looked into why that was the case, he found that there was a shortage of educational psychologists.  He said the Government had spent £32 million on more support and on training for educational psychologists, but warned that the backlog cannot be sorted if assessments don’t take place.

• The ratio of educational psychologists covering the Cheshire West and Chester area was one for every 5,822 children and young people
• 2017 to 2019, a report by the Department for Education found that the average number for the whole country was one for every 3,500 young people, and in the north-west it was one for every 3,900

Siobhan Baillie (Stroud) (Con)  talking about her own experience and that of her peers who went to school in the ‘90s, said she was not surprised that there has been a 400% increase in adults obtaining an ADHD diagnosis, as such conditions were just not discussed. She added that “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.”

Jon Trickett (Hemsworth) (Lab) ITN and the Bureau of Investigative Journalism did a careful analysis across the country, and they estimate that the true scale of the SEND funding crisis, the true financial black hole facing councils, is more than £1 billion.

He said he had looked at the national autism strategy, which was published in 2022 and it, “offered peanuts to try to resolve some of these problems”. He added that, The Government promised that by the end of the strategy in 2026, which is years away, they would have made, “demonstrable progress on reducing diagnosis waiting times and improving diagnostic pathways for children, young people and adults across the country.”

Concern was also expressed over the number of EHCP applications being turned down, amid recognition that, when parents go through the complaints process, between 90% and 100% of cases are found in the parents’ favour. ‘This tells me that there is a problem with parents having to fight tooth and nail to get plans in place,’ recognised Maria Caulfield, Parliamentary Under-secretary of State for Health and Social Care.

Mark Eastwood, MP for Dewsbury also identified that the time it can take to secure an EHCP (‘an EHCP should be completed in 20 weeks. That is rarely the case’) can compound the time that children wait for diagnosis and support and therefore called for better training for professionals involved in the issuing of EHCPs.

Mr Colburn recognised the ‘systematic failure’ of the system while Mr Eastwood called for the government to ‘ensure that we have a system that is fit for purpose, and suitable for the applicant, their family and the educational support network’.

What the government is doing about it

The point of all of this discussion is to bring about much-needed change. So it was good to hear, throughout the debate, specific calls from MPs for clarity from the government as to what actions were being taken to address concerns. 

Elliot Colborn called for Ms Caulfield, to provide an update ‘on the steps the government is taking to bring down waiting times and improve training for assessments’.

In response to issues raised, Ms Caulfield outlined the government’s response, including:

• £74 million invested in the autism strategy, with £2.5 million specifically spent on improving autism diagnostic pathways
• a framework from NHS England that is transforming learning from Autism and ADHD pilot schemes into scalable action to improve support and care for people across the country, including 72 pilot tests last year for improvements in diagnostic pathways 
• the launch of integrated care boards (set up in July 2022) to improve the assessment process, including an executive lead for learning disabilities and Autism on every board who will hold local services to account
• the introduction of 287 mental health support teams offering support to about 4,700 schools and colleges in the UK 
• £600,000 committed to expand an Autism early identification pilot in at least 100 schools over the next five years
• In 2022, £79 million was invested to give around 22,500 more children and young people access to community services
• publication of the SEND review that ‘will make a strategic difference with getting people assessed, diagnosed and supported as quickly as possible’

Ms Caulfield closed by recognising that there is ‘a lot of work to be done’ and ‘that it has to feel different for parents, children, young people and adults who are waiting for an assessment and the care they need to improve their experience of living with Autism and ADHD.’

Peter Gibson, MP for Darlington reminded everyone that ‘We can go so much further for children with complex needs to ensure that there is proper support in place to allow them to flourish, but it starts with prompt diagnosis.’

A message of hope

Crucially, among the stark realities, were glimmers of hope. Not least, that shared by Mark Eastwood, MP for Darlington, who had a personal connection to the debate: ‘Finally, 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.’

Elliot Colburn reiterated this view: ‘It is very clear that the situation with waiting lists for Autism and ADHD assessments is desperate and requires urgent attention. These are waiting lists that we would not accept in any other area of the NHS. We are poorer as a country for not taking full advantage of the talents that neurodiverse people can bring.’ 

What next?

• For a full transcript of the debate in parliament, click here.
• To read about one young person’s experience of waiting for an ADHD diagnosis, click here.
• To read about accurate identification of SEND in the classroom, click here. 
• Click here for the Debate Pack.

To find out about how I AM can offer support contact us at admin@i-am autism.org.uk or give us a call on 0161 866 8483