New study finds online self-reports may not accurately reflect clinical autism diagnoses. Adults who report high levels of autistic traits through online surveys may not reflect the same social behaviors or clinical profiles as those who have been formally diagnosed with autism spectrum disorder.

[u/mvea]

https://www.psypost.org/new-study-finds-online-self-reports-may-not-accurately-reflect-clinical-autism-diagnoses/

[u/neotheone87]

Up until 2013 you literally could not get clinically diagnosed with both ADHD and Autism. And since then a lot of ADHDers and a lot of Autistic people have learned they have both because they saw content on people that have both, began to wonder about it, researched the hell out of it, saw multiple therapists over it, and then if they were super lucky got a referral to a psychologist who actually knows the updated information. Usually, however, they just get diagnosed with ADHD with OCD, Social Anxiety, Bipolar, Cyclothymia or Borderline Personality Disorder.

Also, Autism and ADHD literally have symptoms that mask each other. Prior to 2013, many of these individuals were unlikely to get diagnosed with either and to get the accurate diagnosis of both was impossible.

For the first time in the 12 years since we could diagnose both ADHD and Autism we are getting a book, Explaining AuDHD by Dr Khurram Sadiq, on that specific combination by a psychiatrist who not only specializes in both ADHD and Autism for 20+ years but is also both himself.

Both ADHD and Autism are in horrible need of updating to reflect how their symptoms change as people progress from childhood to adulthood with ADHD and/or Autism. Because up until recently, a lot of professionals mistakenly assumed people simply grew out of ADHD (in particular) and Autism as well due to people masking those symptoms or the symptoms turning from external presentations to internal ones.

EDIT: here are a bunch of studies on the issues.

Mental Health Professionals’ Experiences of Adapting Mental Health Interventions for Autistic Adults: A Systematic Review and Thematic Synthesis

A Systematic Review of Healthcare Professionals’ Knowledge, Self-Efficacy and Attitudes Towards Working with Autistic People

Clinician Knowledge, Confidence, and Treatment Practices in Their Provision of Psychotherapy to Autistic Youth and Youth with ADHD

Understanding Autism as a Condition in Mental Health Clinical Practice: Clinical Perspectives from a Youth Early Psychosis Service

Preparation of Mental Health Clinicians to Work with Children with Co-Occurring Autism Spectrum Disorders and Mental Health Needs

A blind spot in mental healthcare? Psychotherapists lack education and expertise for the support of adults on the autism spectrum

A Delayed Diagnosis of Autism Spectrum Disorder in the Setting of Complex Attention Deficit Hyperactivity Disorder

"Females are more likely to be misdiagnosed or have a delayed diagnosis compared to males. Other factors that contribute to delayed diagnosis include low socioeconomic status and belonging to an ethnic minority."

[u/snow-mammal → u/neotheone87]

I mostly agree—however, if people “usually” get diagnosed with ADHD and OCD, social anxiety, bipolar disorder, cyclothymia, or BPD… don’t you think that is a potential indication that people are mis-self-diagnosing?

I’m not saying that’s the case for sure, but I don’t necessarily trust a layman’s perception of their own symptoms. Just because you might understand your own experience doesn’t mean you know which diagnosis it corresponds to. There are distinctions between social issues in ASD vs. other disorders that some people may not realise exist.

Maybe I simply don’t get it because I have mild-moderate autism and not something more borderline. But I have autism and severe ADHD-C and personally had more of an issue getting an ADHD diagnosis than one for ASD. Which is to say that the clinician that diagnosed me with ASD told me I was too smart to have ADHD and that he wasn’t even going to test me for it because that I fit the “Asperger’s” profile. But when I finally went to get an actual assessment for ADHD, at the end after it was over, he told me verbatim “you definitely have ADHD.”

There are definitely bad clinicians out there, but in my experience, once you’re actually assessed (vs. simply told “you probably don’t have it” and then not referred for an actual assessment), clinicians actually are able to spot and distinguish ASD and ADHD. I feel like what happens if they make assumptions about you and assume you don’t need an assessment, but the thing is the assessments do work, so once you’re actually given one they have a lot more information about you and can give an accurate diagnosis.

I understand if somebody wants a second opinion, since you can get bad luck the first time. But if you’re having so much difficulty being diagnosed with something… I also think it might be good to confront the idea that you might not have it. Fixating on a diagnosis because you feel it explains your problems isn’t healthy if said problems can actually be addressed. It’s not healthy for somebody who actually has social anxiety to self diagnose autism and then never get treatment for their social anxiety symptoms. And I think there is a little bit of an issue in some online spaces with people staking their identity on being autistic, even when professionals disagree.

I do think there are issues with diagnosis so I would never question an individual’s (self-)diagnosis. It’s not my business. But at the same time I think one can recognise that there might be community-wide problems that lead to some (not all) people incorrectly self-diagnosing.

ETA: only the last study actually has anything to do with diagnosing autism and it still is an accurate diagnosis. A lot of people get misdiagnosed or delayed diagnosis and that is a very real issue but once you’re claiming that the majority of ASD/ADHD people actually don’t even and couldn’t get an ASD diagnosis, that they “usually” get other diagnoses, that’s when you have to maybe consider that there is some mis-self-diagnosing going on.

[u/neotheone87 → u/snow-mammal]

Except many professionals lack confidence working with Autism and many "experts" are still working off of information 10+ years old.

A Systematic Review of Healthcare Professionals’ Knowledge, Self-Efficacy and Attitudes Towards Working with Autistic People

"Overall, the collated results indicated low to moderate levels of knowledge and perceived self-efficacy about autism among health workers across a range of backgrounds. However, there was disparity of results between studies, both domestic and international in context. For example, this variation is illustrated by comparing four UK studies, in which responses ranged from 88.1 to 91.2% correct answers for knowledge in general practitioners, community clinical staff and psychiatrists (Clark et al., 2016; Crane et al., 2019; Unigwe et al., 2017), whereas one UK study found that only 28% of patient-facing clinical staff (including nurses, psychiatrists and psychologists) reported adequate autism knowledge (Murphy & McMorrow, 2015). Taken together, these results indicate that autism knowledge is highly variable across samples and individuals—and even in samples with higher scores, there is still room for improvement."

[u/snow-mammal → u/neotheone87]

That study includes physical health clinicians (nurses, doctors, etc.) as well as a lot of mental health and psychiatric practitioners who are not even qualified to diagnose autism in the first place.

That study is not representative of the accuracy of diagnosis. It is representative of the general knowledge in health sciences, mostly including people who have never once dealt with autism. It’s not a good overview of the people who actually assess you for it.

I have had horrible experiences with doctors and therapists who are unqualified. That’s a different issue.

https://pmc.ncbi.nlm.nih.gov/articles/PMC5813679/

This study found that the version of the ADOS-2 used to assess adults is actually extremely accurate, even given complex cases—unless one has psychosis, in which case a false positive may actually occur.

https://jamanetwork.com/journals/jamapediatrics/fullarticle/2797438

This study supports the use of the ADOS (the one for children).

https://insar.confex.com/insar/2019/webprogram/Paper29391.html

This study found that the ADOS-2 actually overdiagnosed autism in complex cases (in children).

My point is just that we have tools for this and that a professional who actually diagnoses autism for a living would have a good understanding of this stuff and how to recognise it and distinguish it from other disorders in a clinical setting. No, you should not trust your PCP if they tell you you’re not autistic. But that’s a different situation. Yes, some clinicians are ignorant and/or ableist. If somebody feels that way, they can get a second opinion. But I don’t think it’s useful to act like the individual will always know more about psychology than the professional who has trained for years in the field. Especially not when nobody will diagnose them. It’s unhealthy and it spreads even more misinformation about autism.

[u/neotheone87 → u/snow-mammal]

Clinician Knowledge, Confidence, and Treatment Practices in Their Provision of Psychotherapy to Autistic Youth and Youth with ADHD

"clinicians were significantly less knowledgeable and confident when supporting autistic clients compared to clients with ADHD. Thus, improving clinician perspectives may help facilitate treatment for autistic youth with mental health problems."

Understanding Autism as a Condition in Mental Health Clinical Practice: Clinical Perspectives from a Youth Early Psychosis Service

"Due to this specialised nature of autism assessment, there are a range of identified barriers to some people receiving autism diagnoses (Martinez et al., 2018). Barriers such a long wait times, problems finding providers (Martinez et al., 2018), and an identified lack of clinician knowledge in first identifying the signs of autism (Howes et al., 2021) can all contribute to people not receiving the appropriate support. For many adults seeking an autism assessment, other prohibitive factors such as cost, and fear of not being believed can also stand as barriers to receiving support (Huang et al., 2022)."

[u/snow-mammal → u/neotheone87]

Also I kind of want to ask what the practical application of your standpoint is. What is the point of professionals at all if the self diagnosis is always the one you trust, even when multiple professionals disagree?

Would you admit that mis-self-diagnosis is possible, or do you maintain that the individual is always, without question, right?

What do you think about people who think they have autism, don’t get diagnosed, get treated for what they were diagnosed with, and then no longer have the symptoms that made them think they were autistic? Surely that’s an example of a mis-self-diagnosis? People like that exist. Do you think it would have been better for them to simply ignore the clinicians and continue to struggle with symptoms they could have addressed?

[u/snow-mammal → u/neotheone87]

Again, the first study says nothing about diagnosis. There are so many clinicians who are licensed to provide psychotherapy but who are not licensed to diagnose autism.

That is like sending a link to how little physical therapists know about MCAS and using it to prove immunologists can’t accurately diagnose it.

The second study is talking specifically about autistic children (or children with autistic traits) with psychosis and how we treat them. It also has nothing to do with diagnostic validity. Those children are already diagnosed with a psychotic disorder and maybe also autism. The question is how best to treat them. Psychosis and autism are linked, and we’re still learning about how they interact.

That has nothing to do with a person with ADHD who nobody will diagnose with ASD.

[u/FluffTheMagicRabbit → u/neotheone87]

I'm not gonna dox myself with my own medical records so you're just going to have to believe me but I've had a clinical diagnosis with both since 2002.

I agree on everything else though, the criteria are desperately in need of updating. Especially around adult care.

[u/neotheone87 → u/FluffTheMagicRabbit]

Prior to DSM 5 ADHD and Autism were opposing differential diagnoses.

DSM-5 Changes in Attention Deficit Hyperactivity Disorder and Autism Spectrum Disorder: Implications for Comorbid Sleep Issues

And straight from the changes between DSM IV-TR and DSM 5 from psychiatry.org

In changes to ADHD diagnosis: "5) a comorbid diagnosis with autism spectrum disorder is now allowed."

What likely happened in your case is being diagnosed with one at one time and the other at a different point and likely by 2 separate providers.

[u/FluffTheMagicRabbit → u/neotheone87]

Ah right I see,

It's an American thing, the DSM disallowed it but the international ICD-10 did allow it at the time. This Cambridge paper does highlight that difference and mentions studies where the connection had been made against the DSM's guidance. Due to the DSM's hierarchical model it was believed that ADHD was essentially a less form of autism but the understanding is now that it's a separate thing.

I'm not American, the UK NHS uses ICD

[u/neotheone87 → u/FluffTheMagicRabbit]

Dr. Khurram Sadiq is a UK psychiatrist who has also talked about how prior to 2013 you generally could not diagnose them both together.

Article from the UK Guardian:

The Sudden Rise of AuDHD

Also, your article specifically refers to Aspergers which was a separate diagnosis from Autism in DSM IV-TR. I would have to track down the Comorbidity section of an old DSM IV-TR to see if ADHD was allowed with Asperger's.

[u/FluffTheMagicRabbit → u/neotheone87]

Asperger's was not allowed as a comorbidity of ADHD in the DSM, however, Asperger's is deprecated and now part of ASD and effectively transforms the old diagnosis of Asperger's to ASD.

It was thought that Asperger's was distinct but is now considered not to be. The Guardian article specifically refers to the DSM as its source around the lack of dual diagnoses - an American document.