'This is scarily familiar': The parents learning they have autism after their children's diagnosis
By ITV News Producer Hannah Ward-Glenton
Lorraine didn't believe the therapist who first suggested her daughter was autistic. But once her diagnosis came through, the similarities between the two of them made it clear that Lorraine might also be neurodivergent.
"My immediate reaction was [my daughter is not autistic], she's exactly the same as me. It turns out she was, and it was about that point that I started thinking 'right, hang on a minute, this is scarily familiar to me'", Lorraine, who is based in West Lothian, told ITV News.
Lorraine is one of an increasing number of adults finding out they are autistic after seeking out a diagnosis for their child.
Marc Goblot got an autism diagnosis for his daughter in 2004 when she was just two years old - his diagnosis came much later, in 2021.
"At that time I didn't really think about any of that stuff in myself," Marc said about his daughter's diagnosis.
It was only during the pandemic, when he had more time to reflect, that Marc says "it all clicked".
"[My daughter] is very expressive and very up and down and can be quite a rollercoaster, and ... I was very much like that too."
"It was only later that I saw, you know, we present differently, but the underlying is similar and that takes time to figure out."
The exact number of parents who find out they have autism as a result of their children's diagnosis is unclear, particularly as autism more widely is believed to be severely underdiagnosed, but anecdotally, more and more people are seeking out diagnoses, according to charities, researchers and families who spoke to ITV News.
Perceptions of 'what autism looks like'
Lorraine assumed her daughter Tiger couldn't be autistic as her nephew had been diagnosed and she didn't see any similarities between the two of them.
"I said, 'No, no, that can't be. My nephew's autistic, he's a boy. I know what autism looks like'".
It was only after Tiger's diagnosis came through that Lorraine realised the similarities between her and her daughter likely meant she was also autistic.
Marc said the stereotypical aspects of autism helped him to get a diagnosis for his daughter, but they prevented him from realising he was autistic because his more obvious traits were very different to hers.
"I started to see that autism had sort of a checklist or a lot of characteristics and I was astounded at how much it reflected some of the things I saw her doing, like lining up toys and straight lines and all that ... Lining up the toys in the straight line was not something I remember doing ... I didn't recognise I had a sort of different flavour of autism than she does."
The fact that autism can present in many different ways can prevent people from understanding what autism is and whether or not they have it, according to autism and neurodiversity charity Daisy Chain.
"Autism is often viewed by people in a very specific way, which they maybe don't identify with how they are until they go through the process with their child," the charity's Head of Children & Family Services Jenny Hewitt said.
Common stereotypes of an autistic person might be a boy who is not very good at making eye contact and is really interested in trains, for example, and while autistic people often do show a 'special interest' in certain things, that can be anything from being really passionate about specific genres of music or types of clothing, the charity's Marketing, Media & Policy Manager Emily Keavney said.
"Often for women especially, your special interests can be much more socially acceptable, so they're not necessarily noticed.
"So if you've got a little boy who sits in nursery who likes his model trains and knows the names of all the trains, then someone might go: 'Oh, not sure about that'. But if you've got a girl who is obsessed with horses and can tell you everything about one breed of horse, you're just like: ‘Oh she just really loves horses’.
Challenges in getting a diagnosis
Even if a person suspects they or a loved one might be autistic, the process of getting a diagnosis can be challenging because of long waiting lists and the stigma attached to autism.
NHS data from January to December 2023 shows that 85.5% of patients who had a referral for suspected autism had been waiting more than 13 weeks for the follow-up appointment.
Even the NHS webpage on 'How to get an autism assessment' warns: "It's not always easy to get an autism assessment. Waiting times can also be very long."
This is particularly the case for adults, who tend to face even more barriers to formally getting tested and diagnosed.
After getting referred to an autism specialist by her GP, Lorraine had to wait several years before she was able to get a diagnosis.
"I didn't hear anything for a long time and then had a letter to say 'you've been added to the assessment list'. It took about two and a half years for me to come to the top of that list," she said.
Marc also faced difficulties in getting a formal diagnosis, despite having carried out lots of his own research after his daughter's diagnosis.
After his referral Marc's questionnaires got lost in the post. After he re-sent his documents, he says "nothing happened for quite a few months".
He was told the waiting list was around two and a half years for an autism diagnosis and instead opted to get assessed and diagnosed privately, but that is only an option for people who have the financial means to access private medical care.
Beyond the waiting lists there are issues with people recognising autism in adults because so many have spent a lot of their lives "masking", which the National Autistic Society describes as making efforts to "act in ways that come naturally to non-autistic people, to meet social expectations and blend into society".
That can make it difficult for people, including GPs, to recognise that people are autistic.
"Because I am professional, I look like I'm doing fine, you know, but up until my thirties, I wasn't doing fine," Lorraine said.
"I've done a lot of fairly typical things for autistic females to do, it's been very chaotic, and I didn't understand that, didn't know why that was happening, didn't know why I made the choices I made.
"But then I didn't know everyone else wasn't the same. I genuinely thought everyone else was the same."
The government updated its national strategy for autistic children, young people and adults in July 2021, which pledged that autistic people "will be able to access a high quality and timely diagnosis, as well as the support they need following diagnosis" by 2026.
'I'm very proud to say I'm autistic'
While there is still stigma attached to being autistic, many people feel a sense of relief and understanding after getting their diagnosis.
"Many autistic people have grown up feeling that they are in a very problematic environment and feeling that they have done something wrong," Professor of Clinical Psychology at University College London Joshua Stott said.
"Why do I keep struggling to make friends? Why was I bullied at school? There must be something fundamentally wrong with me ... And actually, when you get an autism diagnosis for many people, you look back and say, 'oh, that was what was happening, I understand now why I had those horrible experiences'," he said.
And that very much chimes with Lorraine and Marc's experiences.
Lorraine said she used to be against the idea of labels, but that changed when her diagnosis gave her a better understanding of how her brain works and who she is as a person.
"I genuinely didn't understand most of my life. I didn't understand relationships, friendships. I didn't understand why people didn't like me. I didn't understand why I had such depression, anxiety."But for me it was important because my daughter is now 20 and she has overcome so much. I wanted her to have a positive role model, and I wanted her to see that.
"Now I'm very proud to say I'm autistic."
Marc said that finally getting his diagnosis was "great" and that it felt like a "fantastic revelation".
"It's incredible as an adult because suddenly so many things make sense, you can connect them all up in a way that I never could.
"It was great to understand what that was in order to then go forward and figure out what to do about it."
Lorraine and Marc both now work in advocacy to increase awareness of autism and other neurodivergences to try and improve the experiences of others.
"My daughter was diagnosed 17 years before me - had I known earlier, it would have helped a lot, that would have made a difference," Marc said.
How common is autism?
One in 100 people are autistic, according to government estimates, but that number is likely to be much higher in reality according to ongoing research.
The number of autistic people in England could be more than double the number typically cited in national health policy documents, research by University College London suggested in June 2023.
The team’s estimates say that between 150,000 and 500,000 people aged 20 to 49 years old may be autistic but undiagnosed. Meanwhile, between 250,000 and 600,000 autistic people over the age of 50 may be undiagnosed – more than nine in ten of all autistic people.
Why are more people getting diagnosed as autistic?
There are some key reasons as to why more adults are getting diagnosed with autism, UCL's Professor Stott explained, including a history of underdiagnosis and changes to the criteria that allow for somebody to be diagnosed as autistic.
"There's been a widening of what being autistic is, which then means that more people perhaps fall into that bracket than would have done under previous diagnostic criteria," he said.
Research has also typically focused on how autism presents in children, and so if it is not identified at a young age, it can be harder for medical professionals to spot later in life.
Referrals and diagnoses tend to increase as people become more aware of what autism is, but that doesn't mean that people are self-diagnosing themselves and causing a boost in numbers, Daisy Chain's Emily Keavney said.
"That's one of the issues as well, isn't it? Because people will say it's just a trend ... But if you're not neurodivergent you don't spend hours and hours and hours of your life researching whether you might be you might be, you don't do that."
Is autism inherited?
Autism does have a strong genetic component, and does run in families, according to research charity Autistica.
"Many parents find out they are autistic after their child has been assessed," the charity says on its website, but while genetics play an important role, it isn't yet known exactly what causes autism.
"Having a genetic component is not the same thing as, for example, one gene that you can pass down," it says.
If you think that you or a loved one could be autistic, you can get more information on the NHS website or by contacting your GP.
The following organisations also provide a wide range of information and services for people who are, or think they might be, autistic:
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