Do Late Autism diagnoses Lead to Better Understanding?

(Nora Carrol/Getty Images)

Despite the stigma, Autism spectrum disorder holds for many people through misinformation, fear and lack of understanding.

Jane Lambert, CEO of Makewell Clinic, a privately run diagnoses centre, said in a BBC video report by Gem O’Reilly, ‘On the NHS, there were so many families, children, and adults on the waiting list, and locally it's around three years to be assessed for ADHD, similar for ASD. And I think it's kind of a nationwide picture, really.’

This was after her young daughter did not fit the criteria the NHS currently uses, despite showing symptoms of ADHD (Attention Deficit Hyperactivity Disorder). Still, when privately assessed, she was diagnosed straight away.

However, the criteria for a diagnosis of ADHD is different to a diagnosis with Autism and can be quicker, with one or two sessions with an assessor, and Autism has other factors that need to be looked at. For example, there is more Government help with getting a diagnosis of ADHD than Autism, which currently has no help, apart from support groups led by people who are on the spectrum themselves. In addition, several other conditions are similar to autism that assessments must rule out. 

I spoke to Doctor Joanne Porter, a Clinical Psychologist who specialises in helping Autistic Adults as part of her private practice and also leads an NHS Adult Autism Assessment Service.

“So, the first question I have is, do you believe that late autism diagnosis leads to better understanding for people diagnosed or medical professionals?”

“Yeah, that would be, I think, an individual experience for the autistic person, I think for most people. Whatever age you are given a diagnosis, that's probably going to be helpful to you in relation to understanding yourself and your place if that's something that you’ve been thinking about.”

“I think having a diagnosis helps other professionals to make reasonable adjustments, depending on what it is that the other professional is doing, perhaps therapy, a medical intervention, an appointment. Adjustments can be made if somebody knows what a person’s needs are. Then that can help them (the professional) make that experience better.”

“I guess what people want is probably like more understanding and know more of themselves and to feel like they're listened to. Which I feel like that's kind of the thing that people are struggling with, especially with the  NHS right now.”

“So the next question that kind of leads into this is, do private assessments have better criteria for evaluations compared to the NHS one?

“It depends. I mean, I've had some feedback from people that have been diagnosed saying, you know, It felt slightly outdated rather than when they went to have a private assessment; it was slightly different.”

“I wondered if there was any difference?”

“The only difference between a private and an NHS assessment should be time because it’s highly likely a private assessment will be quicker. Because in the main most people can’t afford it so will be looking to the NHS for their assessments, hence the high number of people waiting. It's important to understand that there is no test for Autism.”

“Yeah.”

“Private assessors may add in extra assessments; for example they may look at areas of executive functioning. If they are adding in extra assessments it is important for the person being assessed to ask why.” (There needs to be more than a couple of tests in an assessment if you aren’t sure.)

“Yeah.”

“-Why those things are happening.”

“So someone might. say, 'can you help with this? I feel like I'm struggling with this part or that.' And they might do extra tests?”

“ They may do it to give some further understanding around those areas; I haven't worked in a private assessment clinic, so I can't answer that.”

“-But if you're looking for an assessment, whether it be NHS or private,  it needs to adhere to the NICE Guidelines.” (The NICE guidelines are recommendations on how healthcare works in England.)

Dr Porter had an essential perspective on this for our interview, revealing,

 “It, I, would it be really to be able to talk that through whether it or group, I think that when we look at, if the NHS looks at looks at one in group, it's about numbers, Is there nearly enough people that have experienced this to facilitate a group, if you had two people a year, we wouldn't be able to, but if you had lot more. Four people or five. It's an area, I think that can be a little bit more (explored).”

“I feel like misunderstanding in diagnosis or just feeling unsure is something that people I know have experienced when I've asked them for this particular article. So, you know, anywhere where someone can just feel comfortable to talk or just to say, well, 'I've felt better now I've diagnosed, or I don't know.”

“I'm unsure.' You something well where they feel like they're listened to is quite important, but it's just there either is groups, and there isn't enough information about them, or there isn't a group because like, as you've said, there's not enough people that would be interested in going to such a group.”

“Some people don't like groups, but then other people say yes, they will go to a group.”

When it comes to supporting people who are unsure or misdiagnosed, Dr Porter is keen to point out that there is support and there is more understanding than there was.

 “Yeah. Post diagnostically, post diagnostic support is really important.”

“I can only speak for my service, where there are groups for people who have just received a diagnosis. These support the understanding of what autism is for them. But there's also the practitioners themselves who would have a conversation with somebody about their new diagnosis. I think there's a lot of support for newly diagnosed autistic people.”

In particular, the OAR article helped highlight the importance of supportive spaces and understanding for late-diagnosed people.

“I think, in one of the evidence articles I'm using for this particular article, there were people that were, you know, obviously because autism is quite a broad thing, they were misdiagnosed with other conditions that could be seen as, you know, nothing to do with autism or just something like insomnia or, hearing issues, and it wasn't that. It turned out to be, not being able to cope with certain sensory inputs, and then they were diagnosed with autism, but it felt kind of almost like (an)  injustice to be misdiagnosed and not understood.” 

Dr Jo and I had a similar opinion on this, agreeing that there could always be more safe spaces, support and awareness.

“Yes, it would be important for someone to be able to talk that through, whether one-to-one or in a group. Its important to know that if the NHS looks at running a group, it's about numbers, are there enough people that have experienced this  to facilitate a group. What i mean is, if you had two people experiencing something a year, a group wouldn’t be reasonable to run, but if you had a lot more then it would be possible. Having said that, I do think misdiagnoses and supporting people to work through that is an area that can be a little bit more explored.”

“I feel like misunderstanding in diagnosis or just feeling unsure is something that people I know have experienced when I've asked them for this particular article. So, you know, anywhere where someone can just feel comfortable to talk or just to say, well, 'I've felt better now I've diagnosed, or I don't know.'”

“Sure, somewhere people feel like they're listened to is quite important, but it's just there either is groups, and there isn't enough information about them, or there isn't a group because like, as you've said, there's not enough people that would be interested in going to such a group.”

“Some people don't like groups, but then other people say yes, they will go to a group. Yeah. It depends individually on the person because it's their diagnosis and obviously their journey. What's key- from my perspective as a clinical psychologist, is that the service is led by the person that is seen. If somebody says, 'This is what I wanna explore, this is what I wanna think about.' That's what we think about with them. That's how we give useful advice and support to help that person.”

The current age limit for an autism diagnosis in children can be diagnosed as young as a year and eight months old. At the same time, many adults, more specifically women, mirror the lack of Autism awareness in young girls as opposed to the number of boys and men diagnosed.  The misdiagnosis of children and adults is common; OAR (Organisation for Autism Research) finds, ‘When it comes to diagnosing autism, much discussion and emphasis are placed on early diagnosis. Nonetheless, for a variety of reasons, a number of people discover they are on the autism spectrum much later in life.’ 

In the article on OAR’s website, another person with a late diagnosis, ‘Donald McCarthy, who was diagnosed with autism aged twenty-eight, notes that “many people go more than half of their lives before learning that they are autistic; the exact number remains a mystery, as research on adults with autism has been scarce.” He advocates for expanding services aimed at detecting autism in children so that more children will be diagnosed early, noting that girls, children of colour, and children from low-income families often slip through the cracks.’

Research with Cambridge University outlined in a study done in 2019 that ‘The patients — five women and four men — generally spoke about the usefulness of a diagnosis and subsequent support and coping strategies; many said they were aware of being different from a young age. Several of the interviewees also reported being misdiagnosed with depression, anxiety, and other mental health conditions prior to their autism screening.

The participants all appeared to have had characteristic symptoms of autism as children, such as exhibiting repetitive behaviours and experiencing social isolation. Many were pushed to seek a diagnosis, albeit late, after concerns over social functioning and relationships became “untenable.” Diagnosis came with a combination of emotions, including feelings of vindication and overall clarity. Post diagnosis, participants said they had better self-awareness and were more readily able to take control of their lives and address previously difficult situations.’

The study also notes, as a result, ‘Given how poorly autism was understood and recognised fifty years ago, the study suggests that there are likely many older adults living with undiagnosed autism today. “Future research needs to gain an estimate of the number of undiagnosed cases of autism in older adults, and this may partly be achieved by screening older adults who are currently accessing mental health services.’

According to the NHS website on getting a diagnosis for ASD (Autism Spectrum Disorder), the example of criteria is split into two parts for children and adults with questions for a guardian or family member being asked them or, in the case of an adult, a questionnaire followed by possibly asking family and friends, as well as checking reports from doctors on anything that could indicate it. 

Rhiannon Turner, an ADHD specialist at the clinic, added, ‘Wait times in the NHS are an issue because it's time that could be used appropriately for treatment to help a child or a young person, or an adult reach their full potential.’ 

This follows a quote from the NHS, showing the increase for adults and children waiting to be diagnosed with ASD or another disorder affecting how they learn and process things in daily life. 

In a statement for the video report about Makewell Clinic, the NHS said, ‘Staff are working hard to meet the record demand of people coming forward for support, with the number of people accessing learning disability and autism services increasing by Twenty-three percent, compared to the same time last year.’

It is possible that since this webpage for examples of children and adults hasn’t been updated since April 2018, this information and the assessment criterion are pretty outdated.

In particular, the ‘assessment of functioning’ can look at ‘-your child’s strengths and abilities in areas like daily living skills, communication and thinking.’ according to an article written on an Australian parenting website aimed at later diagnoses for young people.

In particular, the topic Dr Porter and I kept returning to was whether there was a significant difference in boys or girls, men and women being diagnosed as on the ASD spectrum.

When I asked, she had this to say about whether more men and boys were more diagnosed.

“So, I know this is kind of a hot topic for the article, but I was looking at it, and It is kind of an important point because I've had it in people that I've interviewed. And, I'm not really sure what you think about it, but there's been significant differences between girls and boys and men and women diagnosed.”

“Do you think there's a bias still stereotypically when it comes to diagnosis on whether someone would do this because they're a girl or someone would do this because they're a man. Anything like that with autism diagnosis?” 

“It's been such a hot topic for a while. Public services are really catching up actually. The service that i work in, there are more women waiting at the moment.” (Than men.)  

“Yeah, it feels like that. When I did my research, there are, since the pandemic, I guess people have been working from home, they've realized, 'oh, I work better when this happens-I work better when I have headphones on; I work better when I take Fifteen-minute breaks, I work better when I do this or that..' They realize how they work.”

“-Yeah. And if, it doesn't work. 'I have to find how I can function.'” 

However, the issue this raises is that, for example, a teenage girl may have already learnt to ‘mask’ or hide her differences to avoid ridicule and learnt expectations of how she should act, which could skew the functioning part of an assessment and mean a misdiagnosis. 

Lucy Bint, a patient assessed at the Makewell clinic for her ADHD,  admitted she felt relief over her diagnosis and being understood, ‘It's not just me. There's something that is there that lots of other people have. And lots of other people think the way I think. And it's not strange. It's just ADHD. I'm Twenty-two, and I've only just been diagnosed with ADHD… I feel incredibly lucky that I had, you know, another way of getting help.’

"It's nice to know that there's an explanation for the way I think and the way I see life and the way I try and go about things; it's not wrong. It's just it's me. And it's slightly different, and that's okay.’

Both the delay in diagnosis and the stigma surrounding people later diagnosed with Autism takes an understandable toll on mental health, with contrarily

 conflicting findings.

      One American study by Verywell Health and Edgewell University, published in the Journal of Autism and Developmental Disorders, concludes that ‘receiving an autism diagnosis in adulthood rather than childhood can lead to lower quality of life, more severe mental health symptoms, and higher autistic trait levels.’ which with no access to appropriate therapy or other support from understanding family can be alienating. 

Liam Cross, PhD, Co-author of the study, concludes this is due to"-the culture of the time of the ‘70s, ‘80s, and ‘90s when a lot of these people were growing up and there wasn’t so much awareness of the whole spectrum, (and) It came out just how difficult it is to get a diagnosis—especially for adults—how long it takes, how little funding there is out there for it, how many holes people have to jump through.”

Dr Porter and I have a similar stance on how workplaces and schools, even in general, people can educate themselves and be more accepting. 

I believe that understanding that Autism isn’t a checklist of definites signposting that someone is Autistic is already leading to a better understanding of the condition for them if only the focus increases towards adding more support for areas in which a child or a young adult may be struggling, such as schools and workplaces, outside of the waitlist issue for a diagnosis.

She had this to say when I asked her whether she thought there should be better support for workplaces or schools just to create more awareness of how someone might need to learn in an environment or how someone might get help. 

Especially if they were unsure about where they needed to go or what to do.

“I think it's important to know who you are. There are really good services for employers.. So, I work at a service for adults; there are some very good services for people with  (Autism.) Some great guidance for employers and employees. I think it's getting there; there could always be more room for support.”

“It's good that it's improving, and there's some support that there could always be more, but it's good that it exists already.” 

“Was there anything you needed to add?  or any thoughts you have?”

“I think one of the things that a diagnosis does is open up a conversation for people.” 

“Yeah. Which is always a positive thing. If you obviously need to discuss difficult topics like diagnosis or understanding, or maybe, you know, outdated views a family member might have, or a friend, so you can talk about them.”

“It's important-understanding. Then when they're talking to their employer about what their needs are, it gives their employer an idea of the space they can work within. I think it would be great If we could move away from diagnoses-  if we didn't have to have a diagnosis to do that.”

“For me, as an example, to say to my employer, 'I need a low stim (Stimulation) space...' I can. Because I'm lucky that my employer understands… it would be fabulous if all employers could support all of their employees in the same way.”

When I asked people who suspect that they are on the Autistic spectrum if there were any barriers they faced though lack of understanding from employers or similar, with no official diagnosis, I found that their employers or family struggled to understand and accommodate them unless there was a diagnosis.

“Yeah, because I've had feedback from people that have been like, "Oh, it took me a long time because I yet don't have a diagnosis. Even though I have these other conditions that it would help to have, I don't know, a raised chair or a special keyboard. If my employer doesn't see a diagnosis...', 

“They obviously don't want to spend what little budgets they have or something on this that might help me, you know, there there's no…” (guidelines for someone without a diagnosis needing equipment at work, currently.)

“Yeah, that does sound like something positive. People have also have been saying, 'Hey, what if this happened? You know, what needs to happen in order for this to happen?'

“So, I want to say thank you for letting me interview you. I know you are quite busy, I appreciate your help with this article.”

“Thank you.”

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