Autistic adults thought they were ‘bad people’

Summary: Many people on the autism spectrum who were not diagnosed until later in life grew up believing they were “bad people.”

Source: Anglia Ruskin University

Many over-50s who were diagnosed with autism late in life had grown up believing they were bad people, according to a new study published in the journal Health Psychology and Behavioural Medicine.

Researchers from Anglia Ruskin University interviewed nine adults about their experiences of being diagnosed with autism in their 50s. The participants were aged between 52 and 54.

As children, some participants recounted having no friends and being isolated from others, and as adults they could not understand why people treated them differently. Several had been treated for anxiety and depression.

Participants also highlighted the lack of support available to adults with a new diagnosis.

It is thought to be the first study of its kind that examines the phenomenon of receiving a diagnosis exclusively in middle age.

This shows an older man holding his head
It is thought to be the first study of its kind that examines the phenomenon of receiving a diagnosis exclusively in middle age. The image is in the public domain.

Dr Steven Stagg, Senior Lecturer in Psychology at Anglia Ruskin University (ARU) and lead author of the study, said: “One aspect of the research I found heart-wrenching was that the participants had grown up believing they were bad people. They referred to themselves as ‘alien’ and ‘non human’.

“The research also suggests that receiving a diagnosis in middle age can be positive. The participants often described it as a eureka moment that brought relief into their lives. It allowed them to understand why others had reacted negatively towards them.

“Clinicians and health workers need to be aware of the possible signs of autism. Often people are diagnosed with depression, anxiety or other mental health conditions and the autism is missed. More work also needs to be done to support older people after they receive a diagnosis.”

[divider]About this neuroscience research article[/divider]

Source:
Anglia Ruskin University
Media Contacts:
Jon Green – Anglia Ruskin University
Image Source:
The image is in the public domain.

Original Research: Open access
“Living with autism without knowing: receiving a diagnosis in later life”. Steven D. Stagg and Hannah Belcher.
Health Psychology and Behavioural Medicine doi:10.1080/21642850.2019.1684920.

Abstract

Living with autism without knowing: receiving a diagnosis in later life

Increasingly adults over the age of 50 are receiving a diagnosis of autism spectrum condition. Growing up in a time when autism was poorly recognised, these adults have lived unknowingly with the condition and face readjustment. This paper reports the first study to investigate this population. Nine adults over the age of 50, who had recently been diagnosed with ASC, were interviewed, and thematic analysis was used to analyse the transcripts. Results showed that the participants had received treatment for anxiety and depression. They reported ASC behaviours in their childhood and growing up they felt isolated and alien. Receiving a diagnosis was seen as a positive step and allowed for a reconfiguration of self and an appreciation of individual needs. Given the positive aspects of receiving a late diagnosis, more work is needed to identify older adults with undiagnosed ASC.

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  1. Michele P, wow, I have pondered the same questions you posed… and hypothesized the same – that many a woman enters a “mid-life crisis” or other breakdown due to undiagnosed ASD and a lifetime, however long that is for them, of anxiety, depression, shame, guilt – for being different, for just plain exhaustion from years of masking, for the impact not knowing has on their relationships. Add addictions of all sorts that often also seem to be a high risk, as well as a loss of hope and suicidal thoughts. I agree – we are NOT BROKEN, don’t need a fix, but we do need much broader education and earlier diagnosis, to help the rest of us to know they are not broken, and to provide the proper supports.

  2. Autism isn’t the only thing that can be diagnosed TOO LATE! We have a lot of older people with serious issues that are still not adequately recognized or treated. I was born with Chiari Malformation (brain damage). All my life I have been different, lonely, and treated without understanding. My difference has made it okay to treat me with cruelty and abuse. NOW I have serious brain damage from it, but at 70, it is still not treated like it should. I am TOO OLD. Mark it off to aging decline. But it’s not okay! There are things that can be done. But I am physically impacted by health issues that are the result of a lifetime of inadequate treatment. I am not beyond help! I simply can’t get it. I may live another 20- 30 years. I would like them to be worth living. But it’s not likely unless I get the medical world to recognize the REAL problems and do what can be done to help me. Being of advanced years means TRYING HARDER not writing it off, OR PUTTING IT OFF. I don’t have another 50 years to get it right.

  3. Yes, I was the ‘bad’ kid, the black sheep, everything that went wrong in my family was blamed on me. Nearly bullied to death both at home, at school and every workplace. Always feeling out of place, never belonging, having no friends. My mother told me I was useless, worthless, good for nothing, ugly and stupid every day – if your own mother tells you that, you believe it!

    I was diagnosed 15 years ago, at the age of 51. It was a huge relief to finally know that I am not crazy, just different. But my husband and a couple of my five kids still try to change me to be who they think I should be. No understanding, they won’t do any reading to understand, either. Just, ‘Asperger syndrome is no excuse for being impossible, you need to work harder to be more normal!’

    I am 66 years old. I am who I am! I’ve tried to be who I was expected to be for way too long, and I simply refuse to be somebody I can’t be. I don’t conform – which is a good thing. I don’t brainwash. Which is why my own mother hated me.

    It would be very helpful if there were services I could access. But the only adult group I could go to once a month is in the city (I live in a rural town). I went once – the meetings are always right at rush hour time. Getting there was an absolute nightmare, I was so stressed out that it took me many days to recover. I can’t do that, I don’t have the energy for it, and it was frightening, as the drivers in the city are insane.

  4. What he said!
    No shit? You think?? There are zero sources available for adult females. Everything is based on the male version and people under 25. It’s like for decades they have just assumed Autistics will die off by their mid 20’s. They aren’t wrong. Many do by suicide, overdose, drinking themselves to death or violence. But us women have better skills so we live longer and hit our crisis around the age of our empty nesting time. Totally logical but not noticed by the healthcare world. I’m betting we have pretty high suicide statistics around my age. That is if more of us were actually diagnosed, which we aren’t. It’s not unusual for divorce to follow empty nest so I know I’m not alone in the sudden skewering of identity that follows although I would say that my story is probably pretty rare due to the lack of support. However that’s brought me here to a view not talked about yet. Or I haven’t found it in my research. Similarities in heaps but nothing quite hitting the nail on the head of dare I say it? Senior female autistic life experiences. I’m pretty sure we don’t really make it into full senior season. All the famous Autistics die mid life of suicide or insanity which is really just full sensory overload taking over IMO. A mind that can’t stop knowing and asking and feeding on energy that is diseased because you consume what is in front of you to survive. Both literally and figuratively. That is the human and animalistic way of survival. Some of us are feeding our bodies and some of us feed our minds. We should be feeding both but balance wouldn’t exist without imbalance to compare now would it? Such is life.
    I have Adult autistic ‘children’ as well so I kind of have experience all around this topic at this point in my life. I worry for them and myself. They’re in their late 20’s and early 30’s. Will they survive to see their senior years? Will I to see if they do?
    The money wasted by The Systems of the world trying to ‘understand’ through a lab or limited group s could actually change all of the world if they would just use that money for care and start ASKING US. ALL OF US. We aren’t broken. We are under supported and misunderstood and quite frankly sick to death of being picked apart, and people and groups trying to heal us or fix us or program us. That’s bs. We’re fine. What we need is acceptance and to be surrounded by healthy relationships.

  5. Of course, an admittedly limited sample size… but the research has got to start somewhere. A few useful themes seem to have emerged. It is a profound shock, nearly impossible to come to terms with how rarely older adults seem to be referenced in the autism narrative –given that the diagnosis is receiving such extensive, widely ranging attention. Destabilizing and meaningful it certainly is to stumble upon this paradigm and finally have some way to contextualize one’s perplexing, demoralizing life struggles… but not until the fourth, fifth or even sixth decade of life! Seems like many more of these stories need to be told.

  6. Like a scientist realising a child can also feel anxiety, or that autistics partner-up later in life on average, or than no lab-mouse purposefully damaged or bred with a defect could ever stand-in for an autistic in any ridiculous and bigot-spawned search for a ‘cure’, how long is it going to be before so-called scientists learn some very basic facts about autistics, so they stop producing such already known or naff or ridiculous or speculative or wild or sensational or harmful rubbish at such a huge cost.

    None of the estimated $3 billion a year spent is going to help #actuallyautistic people. It’s all like Nazi cranium-shape and nose-width measuring designed to bolster a mythical norm and get yet another minority exterminated.

    It’s time the funders of almost all autism research were called to account for such a serious ongoing failure – talk to autistics first. Many autistic are shaking their heads or laughing at you. Most Autistic commentators want you collectively punished.

    “Many over-50s who were diagnosed with autism late in life (sample=9) had grown up believing they were bad people, according to a new study published in the journal Health Psychology and Behavioural Medicine.”

    It’s 2019. Why did it take 39 years to talk with 9 autistics? How much did this cost? Were the autistics paid? This is not the worst study, in fact it might herald a slight change in fortunes for autistics, but really, Anglia Ruskin University, you should still be ashamed.

    ~ ʎllɐǝɹƃ uɥoɾ

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