Adult diagnosis disadavantages

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ASPartOfMe
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12 Oct 2021, 7:12 am

Study: Autism Diagnosis Later in Life Linked to Worse Mental Health

Quote:

Fleming's fight to get a referral for a diagnostic assessment started in 2008 when they were 20 years old at the time. An acquaintance pointed out that Fleming had certain traits consistent with Asperger's Syndrome, a term that is no longer an official diagnosis and now falls under the broader category of autism spectrum disorder.

After 10 years of persistent effort, Fleming was referred for the diagnostic assessment by a general practitioner. But they waited another 3.5 years on a waitlist for the assessment.

Fleming is not alone in their experience. Recently, researchers at Edge Hill University in the United Kingdom found that a significant proportion of autistic adults were not diagnosed until later in life—a group referred to as the "lost generation." For many, the later diagnosis has led to worse quality of life and poor mental health outcomes.

The mixed-method study, which was published in the Journal of Autism and Developmental Disorders, surveyed 420 autistic and typically developing (TD) adults about their quality of life and autistic trait levels. The researchers also conducted interviews with eight autistic people who were diagnosed in adulthood.

Liam Cross, PhD, a co-author of the study, says that the research showed that neurotypical people tend to have a higher quality of life outcomes as they age, which is largely attributable to reduced anxiety and more social support. But that's not the case for autistic adults.

The study interviews revealed that autistic adults did not receive a diagnosis in their childhood for a myriad of reasons. In some cases, their parents were hesitant to pursue a diagnosis because they held negative perceptions of autism.

Some autistic people had lower support needs and were considered "high-functioning," allowing them to slip through the cracks. Others simply did not have access to a formal assessment process.

"It also probably speaks 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,” Cross tells Verywell. “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.”

Receiving a diagnosis is critical to improving the lives of autistic people of any age, but especially for adults, Gray Atherton, EdM, PhD, a co-author of the study, tells Verywell.

Atherton says that getting diagnosed with autism provides people an identity and supplies a scientific explanation for their differences, which can prevent them from wrongly attributing the traits to a personal failing.

The researchers also found that gender plays a significant role in the age of diagnosis and quality of life outcomes for autistic adults. According to the study, men generally received a diagnosis of autism several years earlier than women, putting them at a greater risk of remaining undiagnosed and therefore ineligible for clinical support.

Atherton adds that there’s also a misunderstanding about what autism looks like in females—called a "phenotype." The lack of or conflicting information has probably confused a lot of women who might be wondering if they have ASD.

Like so many autistic women, Jenny Carty was diagnosed post-childhood. The 27-year-old got her official diagnosis just one year ago. But she had not even considered that she might be autistic until she was 25 because she had never fit into the stereotype of an “autistic young boy.”

Carty says that learning that she had ASD also gave her the peace of mind to tell other people about her diagnosis.

"I was also quite resentful towards my schools," she adds. "For example, for not noticing when I was a child—for the fact I slipped through the cracks.”

For adults with ASD, Atherton adds that receiving a diagnosis is only half the battle. The subjects of the study, who came from both European and North American countries, spoke of arduous waiting times and stretched services when trying to access clinical support post-diagnosis.

ven though Fleming is now armed with a diagnosis, they are still waiting for the help it was meant to bring.

“At the end of my 20-page assessment report, I was signposted to a virtual workshop and some online support resources along with a selection of relevant books,” says Fleming. “I haven't been appointed a single point of contact for ongoing autism support. I'm very much on my own.”

Bolding=mine
I know this article goes over material that has been discussed here so often it will be redundant and obvious for most readers. One social skill is knowing the perspective of the people you are interacting with, a skill controversially autistics are said to be poor at. We are always getting new members. Some of these members are young who grew up with an autism diagnosis. Many members you will be interacting with here are older who grew up and went through a significant part of adulthood without knowing they are autistic.

I bolded the part about “lost generation”. Ironically this article demonstrated the concept. The article talks about growing up in the 70s,80s and 90s. We have members who grew up in the 50s and 60s, lost indeed.

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Last edited by ASPartOfMe on 12 Oct 2021, 8:11 am, edited 4 times in total.

magz
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12 Oct 2021, 7:45 am

Not surprising - but I'm wondering about possible selection bias: adults often seek autism diagnosis because of problems with mental health.

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ASPartOfMe
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12 Oct 2021, 8:27 am

magz wrote:

Not surprising - but I'm wondering about possible selection bias: adults often seek autism diagnosis because of problems with mental health.

Autistics who died early were not counted for this survey. That is why I describe us as survivors. Same is true for those misdiagnosed or never diagnosed because they still believe in the stigmas.

magz
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12 Oct 2021, 8:32 am

True.
I narrowly escaped a misdiagnosis and lifelong mistreatment myself.

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WeirdMetronome
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12 Oct 2021, 9:18 am

This article more or less describes why I've not bothered getting a diagnosis. First of all the process seems incredibly stressful and long, and I think for me it could potentially be more complicated for a myriad of reasons. I've read bad experiences from other autistic women who get dismissed in the healthcare system. It seems there are still some professionals who have an out dated view of what autism is. Second of all, once I've got the diagnosis.... then what? It doesn't magically fix anything and support for adults is basically non-existant.

There was a time not long ago I was pretty obsessed with the idea of getting a diagnosis... I think I just wanted someone else to confirm that I wasn't just imagining things or making stuff up. But I think unless the process for diagnosis and support for adults improves it's just not worth it.

magz
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12 Oct 2021, 9:22 am

WeirdMetronome wrote:

I understand this perfectly. That's why I still don't have a "diagnosis" as an official document with a stamp, only verbal confirmation from various specialists.
My daughter has the paper because it entitles her to support at school. My friend got the paper at 30 because she works as a teacher and it gives her a reason to refuse to take some additional responsibilities - and enables her to officially advocate for AS students. There's nothing I could expect from the paper in my current life situation.

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Double Retired
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12 Oct 2021, 10:54 am

Study: Autism Diagnosis Later in Life Linked to Worse Mental Health

Quote:

...Recently, researchers at Edge Hill University in the United Kingdom found that a significant proportion of autistic adults were not diagnosed until later in life—a group referred to as the "lost generation." For many, the later diagnosis has led to worse quality of life and poor mental health outcomes...

Did it cause worse quality of life and poor mental health outcomes or did it just chronologically precede them? Perhaps there was a correlation but not causality (unless as others have noted, the causality went in the other direction).

Quote:

...The study interviews revealed that autistic adults did not receive a diagnosis in their childhood for a myriad of reasons. In some cases, their parents were hesitant to pursue a diagnosis because they held negative perceptions of autism.

Some autistic people had lower support needs and were considered "high-functioning," allowing them to slip through the cracks. Others simply did not have access to a formal assessment process...

My parents would not have had me diagnosed because Asperger's Syndrome wasn't available as a diagnosis until 1994, the year I turned 40. After that I was sufficiently "high-functioning" to slip through the cracks. Quite a few other adults could have slipped through the cracks for the same reason. It was a fluke observation by my father in 2018 that caused me to read about Autism which lead me to seek an assessment.

Quote:

"It also probably speaks 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,”

For official diagnostic purposes in the U.S. there was no Spectrum to be aware of until DSM-5 documented it in 2013! (And, like I said, there was no official Asperger's Syndrome diagnosis until 1994.)

Quote:

Receiving a diagnosis is critical to improving the lives of autistic people of any age, but especially for adults, Gray Atherton, EdM, PhD, a co-author of the study, tells Verywell.

Atherton says that getting diagnosed with autism provides people an identity and supplies a scientific explanation for their differences, which can prevent them from wrongly attributing the traits to a personal failing.

I have yet to find any practical benefit from my diagnosis (other than being able to sometimes remind my bride that "I have a doctor's note for that!") The confirmation and explanation of a difference was wonderful!

I sort of read their meaning to be that later in life problems would appear because of Austism. I don't think that is how I would interpret my personal experience. I think Autism caused problems my whole life but wore me down over the years so that I was increasingly mentally exhausted by them. In other words, I'd think the problems from Autism are there the whole life and the mental load accumulates until it might reach some threshold.

And I am unclear what to say about the difficulties in getting an adult autism assessment. From the conversations on WP we can see there is a difference between different countries. And, I suspect there could also be a difference between different health insurance companies and healthcare providers. I live in the U.S. and the only obstacle I hit was that neither I nor my insurance company knew how to find someone to do an adult autism assessment. Once I knew what to look for it did not take long to find someone to do the assessment--but that could be because I live near a major city. And I thought my assessment was kind of fun! (But I think my case might be less complex than what some others need diagnosed.)

P.S. I was very unhappy so much of my working life. Retirement is wonderful!

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ASPartOfMe
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12 Oct 2021, 11:20 am

There was a spectrum to be aware of. With the exception of people who thought Aspergers was not "real autism" and Aspie supremacists Aspergers was always understood to be part of the autism spectrum. It was the late Lorna Wing who popularized both the Aspergers diagnosis and the concept of Autism as a spectrum 40 years ago or so.

theprisoner
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12 Oct 2021, 11:32 am

Quote:

autism provides people an identity and supplies a scientific explanation for their differences, which can prevent them from wrongly attributing the traits to a personal failing.

Diagnosis or not. It doesn't take the sting out of life. The worse thing is being so close to normal functioning but not quite, like some invisible force always sabotages you, or drags you down. It's hard not t ascribe it to personal failing, especially when in other areas you can be quite brilliant.

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carlos55
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12 Oct 2021, 2:46 pm

Although the article is true to a certain extent in getting help as early as possible is essential to ensure a better outcome compared to late / missed diagnosis.

But it is misleading in that if a person is diagnosed late like myself, they probably have milder symptoms & can pass as NT to strangers & even employers. Anyone under 40 in the US / Europe that have not been picked up by parents or school are almost certainly going to be Asperger’s as opposed to asd level 2/3, unless they have been kidnaped & trapped in a basement all their lives.

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HeroOfHyrule
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12 Oct 2021, 3:15 pm

carlos55 wrote:

Anyone under 40 in the US / Europe that have not been picked up by parents or school are almost certainly going to be Asperger’s as opposed to asd level 2/3, unless they have been kidnaped & trapped in a basement all their lives.

Or they're female, even if they're not Asperger's/super "high functioning". My autism was "picked up by my parents" because my brother was diagnosed, but schools and even developmental professionals still ignored my very obvious symptoms and refused to diagnose me for years. I'm not "severe", but I'm also not really "Asperger's" type autistic and don't pass as NT. In school I also rarely met any diagnosed female autistics, even if I knew some relatively "classically" autistic girls.

There's still a huge amount of reluctance to recognize females as autistic even if they have more severe symptoms than Asperger's type autism. It's always pinned as some other issue like ADHD, ODD, etc. I've even met a couple female toddlers in recent years whose parents "can't figure out what's wrong" with their child because professionals keep denying they can be autistic.

autisticelders
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14 Oct 2021, 7:26 am

interestiing conversation. Diagnosis disadvantages? The cost and the problem of finding professionals who understand autism as it is understood today. Most doctors have not kept up with new autism science and only know what was in the (already outdated) books the read in university. Unless the doctor is actively working with adult autistic individuals, I suspect there is a very high quotient of misdiagnosis.

I was diagnosed with GAD, Depression, and by a neurologist who saddled me with many other psychological issues as a diagnosis, mockiing me because I could speak, I married and worked jobs... autistic people did none of those things!! !

I did finally find a psychologist who had worked with adults as well as children and he did give me a diagnosis. The good that came out of those things was from me learning my best strengths and weaknesses so I could do self accommodation. There is no such thing as "autistm treatment" for older adults.

We can be seen for depression, anxiety, trauma, and other things individually, but in the USA and the rest of the world, unless we are applying for disability and government aid/support, or accommodations for work, there is little available to us. (in the USA).

Revealing my autism and "going public" has been meant to give credibility to my blog and other work attempting to support others who suspect autism and who are trying to get diagnosis.

I have encountered stigma, since average understanding "man on the street"ideas of autism means many NT simply assume I am too stupid to have a grasp on anything or to have real information to offer.

Hoping we can change attitudes through education and calling out the need for more information, medical training for doctors and medical support persons, employers and average citizens.

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SharonB
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14 Oct 2021, 6:27 pm

^^ Hear, hear!

OccasionalSeagull
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14 Oct 2021, 7:06 pm

theprisoner wrote:

Quote:

autism provides people an identity and supplies a scientific explanation for their differences, which can prevent them from wrongly attributing the traits to a personal failing.

THIS THIS THIS thank you!
My goodness I've only (poorly) verbally shared vague discussions I've had on here with my husband because this is mine for me but THIS.

I tell him that I understand a great many things as *concepts*, but I dont understand them *internally*. Nothing really "translates" from my head to the outside very well, but the closest I get is life is surrounded by cellophane in places.

I can see it. Its right there. I can KIND OF touch some experiences/ thoughts/ ideas/ feelings but there's this veil, this plastic, this cellophane that will forever keep me separate no matter how hard I push to share it. And because I don't "own" these experiences, thoughts, etc I'm not quite a "person" to many people.

As I get older I dont quite mind it. It still hurts every now and again, but frankly I find people quite horrid generally speaking.
Small, individual contact is best.

The benefit, as you alluded to, for me is I can observe people I knows patterns and see when something is about to go wrong (im notoriously unlucky, I've honed this skill well). I can tell when someone's not following *their* script/ pattern and raise the alarm.

...unfortunately im also plagued by PTSD so its hard for those on the outside to know when to believe me and when to console me. :roll:

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Arathors
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14 Oct 2021, 9:33 pm

Yeah, knowing earlier would've been fantastic. I used to hate myself, always wondered what was wrong with me. I tried as hard as I could - therapy, constant self-examination, the works. But even after all that, I was maybe a few months away from homelessness when I met my partner. I've got no illusions about how long I would've lasted on the streets.

Family willingness matters, too. An expert suggested I be assessed for autism when I was in eighth grade. Got me walloped good at home for embarrassing the family because "you made her think you were r------d".

OccasionalSeagull wrote:

I can KIND OF touch some experiences/ thoughts/ ideas/ feelings but there's this veil, this plastic, this cellophane that will forever keep me separate

I've had a similar experience when it comes to relating to other people. I still remember the first time I perceived it. I was maybe 7, at a sleepover for all the neighborhood kids. I saw them all interact together for really the first time and realized there was something like an invisible web that connected them, and which I couldn't connect to. I didn't react well.

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15 Oct 2021, 3:13 am

I first saw a pdoc in late 1973. I wasn't dxed with Asperger's/ASD till May 2019. That only happened because I moved to be near my (s) daughter, and she backed me up. My previous mental health team in Essex had repeatedly turned a deaf ear to my mentions of autism. Like a lot of people first diagnosed with mental illness, and then getting dxed with ASD much later, the attitude has been more negative rather than supportive.

I do however exclude my current mental health team from that description. It's not their fault that due to the unsupportive, and quite frankly idiotic, behaviour of the mental health lot in Essex that too much damage has been done that can't be repaired.

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