What did you tell us about assessments for ADHD and autism?
We asked for your experiences
10,573 people signed a petition calling on the Government to Review management of ADHD assessments and increase funding.
A further 21,147 people signed a petition calling on the Government to Create an emergency fund for ASD (autism) & ADHD assessments.
A debate on these petitions was scheduled in the House of Commons for Monday 6 February 2023 at 4.30pm.
You can watch the debate on YouTube or read the transcript.
Before the debate, we surveyed petitioners to find out their experiences and views on assessment waiting times for ADHD and autism.
We asked about the experience of people who had a diagnosis of ADHD or autism, were waiting for assessment, or suspected they had ADHD or autism but had not been referred for assessment.
We also asked about the experience of parents and guardians of children who have or may have ADHD and/or autism, and for the views of other respondents on the adequacy of assessment waiting times.
We sent the survey to people who had signed the petitions and shared it on Twitter.
There were 7,340 responses to the survey.
Below is a summary of some of the key themes that came out in the responses to our survey.
Read the full summary of responses.
Respondents said that long waiting times can lead to poor mental health in individuals waiting for assessment
Respondent with a diagnosis of autism: “At the time of my referral […] I was extremely burned out and distressed. I was in mental health crisis but I now know that I was masking the distress […] It is extremely unsafe to delay clinical assessments for people in mental health crisis. […] I was not provided any help and support while I waited.”
Respondent who suspects they may have ADHD: “The younger the diagnosis the better the chance the person and their family have of understanding and accepting the difference in neurology so that the person has the best chances in life. […] A young person’s mental health can be severely impacted by a delay in assessment.”
Respondents spoke of borrowing money and going into debt to get private autism and ADHD assessments for themselves or their children
63% of respondents who were waiting for an ADHD assessment or suspected they may have ADHD said they had considered paying for private healthcare for a quicker assessment.
49% of respondents who were waiting for an autism assessment or suspected they may have autism said they had considered paying for private healthcare for a quicker assessment.
Respondent with a child with suspected autism and ADHD: “We have had to borrow money in desperation to pay for a private assessment for autism and ADHD. She is now also prescribed anti-depressants privately. The cost is extortionate and we can't afford any more […] She has been failed by the system.”
Respondent waiting for an autism assessment: “The NHS waiting list [where I live] is 4 years […] I borrowed to go private in July 22. I have had to borrow more money to access medication as my GP has refused shared care despite a trail of symptoms and misdiagnosis from childhood on my records.”
Some parents of children who are waiting for an autism or ADHD assessment said that long waiting times had impacted their child’s education
Of the children who were waiting for an NHS ADHD assessment, 18% had been waiting between 1 and 6 months, 22% had been waiting between 6 months and 1 year and 54% had been waiting for over a year.
Of the children who were waiting for an NHS ASD (autism) assessment, 16% had been waiting between 1 and 6 months, 20% had been waiting between 6 months and 1 year and 60% had been waiting for over a year.
Parent of a child with a diagnosis of autism: Waiting times are “too long and negativity impacting on children’s education, their self-esteem and understanding of where they fit in the community and wider world, this creates anxiety for their future.”
Parent of a child with a diagnosis of autism: “Diagnosis is essential to making sure a young person receives the right support in school. A delay of 2 years is outrageous and totally unacceptable as this means that a young person is unsupported and misses a huge amount of their education.”
Respondents said there were particular difficulties receiving an autism or ADHD assessment for women
Parent of children with autism: “The process of getting my daughters diagnosed was much more lengthy and difficult than my son. It was difficult to get school, in particular, to recognise their needs and difficulties as I think that ASD (autism) is still poorly understood, very much so in girls.”
Respondent waiting for an ADHD assessment: It is “notoriously difficult to get a diagnosis as a woman, we tend to have the inattentive ADHD subtype which is incredibly difficult to spot compared to the hyperactivity subtype. Too many people still believe 'only boys can get it' or 'only children get it' that it’s nearly impossible.”
Respondent with a diagnosis of ADHD: “Women mask autism most of our lives to fit in - so by the time we realise everything messed up in our lives is due to undiagnosed autism, we are frequently over the age of 30. I talk to women just like me who are still waiting in their 40s and 50s, receiving zero support, suffering yet another lost job and endless mental health issues.”
Respondents identified various barriers to being referred for an assessment
Of the respondents who had visited a GP to ask for an ADHD assessment, but had not been referred:
28% said their GP did not think an assessment was the best course of action.
16% were not referred because there is no ADHD assessment service in their area.
42% gave other reasons such as long waiting times or not being taken seriously by their GP. Some respondents said they were asked to fill out forms to get on the waiting list which they found difficult. Some respondents said they were asked to choose between being referred for an ADHD or an autism assessment.
Of the respondents who had visited a GP to ask for an autism assessment, but had not been referred:
33% said their GP did not think an assessment was the best course of action.
16% said they decided not to go ahead with a referral.
42% gave other reasons such as long waiting times and not being taken seriously by their GP. Some respondents said their GP did not think their symptoms were severe enough. Some respondents said they were asked to choose between being referred for an autism or ADHD assessment.
House of Commons debate
Elliot Coburn MP opened the debate on assessments for ADHD and autism, on Monday 6 February.
During the debate, Elliot said:
"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. I commend the brave families who are being failed by the system but have taken the time to speak out and speak to us about the issue."
The Government's response
Minister for Mental Health and Women’s Health Strategy, Maria Caulfield MP responded to the debate. She said:
"I am the first to admit that we are not where we want to be, and that there is a lot of work to be done. With health and education working together, the SEND review, and our autism strategy, as well as by collecting data so that we know what services are where, setting the standards we expect to be met and working with local integrated care boards, we can ensure we improve the experience for everyone.
"ADHD is under-diagnosed in women and girls [...] and that is 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.
"I am encouraged, but I realise 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."
Watch the debate
MPs debated this petition on 6 February 2023. You can watch the full debate below or read the debate transcript on Hansard.
Read the debate pack from the House of Commons Library: E-petition relating ADHD and autism assessment.
Petition debates can be an important part of a campaign. Debates help raise awareness of an issue and can influence decision-making in Government and Parliament.
Petition debates are 'general' debates which allow MPs from all parties to discuss the important issues raised by one or more petitions, and put their concerns to Government Ministers.
Petition debates don’t end with a vote to implement the request of a petition. This means MPs will not vote on assessments for ADHD and autism at the end of the debate.
What is the Petitions Committee?
The Petitions Committee is a cross-party committee of MPs that considers e-petitions submitted on Parliament's petitions website and public (paper) petitions presented to the House of Commons, engaging the public directly with the work of the House.
What is a Westminster Hall Debate?
Westminster Hall debates take place in the Grand Committee Room in the House of Commons.
They give MPs an opportunity to raise local or national issues and receive a response from a government minister.
Debates in Westminster Hall take place on ‘general debate' motions expressed in neutral terms. These motions are worded ‘That this House has considered [a specific matter]'.
How Parliament works: Westminster Hall debates.
- As well as starting a petition, you can contact your MP or a member of the House of Lords about your campaign.
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