Adult autism diagnosis

[psychma]

I’m having a difficult time lately working in this field. Every adult who comes through my door has seen Tik Tok Videos, YouTube Videos, and read Unmasking Autism (which they claim finally explains their whole life’s struggle). They all don’t make eye contact and look in many ways to be autistic. Certainly, they have crafted their life histories to match DSM-5 criteria, and many give me written documents relating their traits to the DSM-5. It is hard to interview parents because most have some objection like childhood emotional abuse or a lack of relationship with the parents. If you tell them they don’t meet the criteria for autism, they cry, yell at you, and tell you you don’t understand masking.

How do you handle this?

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[Fan_of_Meehl]

Sounds like they are not appreciating the fact that they are patients/clients. I have a conceptual model of engagement in psychotherapy process as a developmental model and one of the earliest stages of that process (after safety) is engagement and one of the components of patient engagement in the therapy process is understanding and accepting the patient role (and its rights and, importantly, responsibilities).

When I was in training I had a great supervisor who taught us about the importance of socializing patients to the patient role. For example, they are there to report their symptoms to you. You are there to make diagnostic determinations. I would be that blunt about it. Set and maintain those boundaries with them. They have a choice to accept them or not. You and they can agree to disagree and they can seek treatment elsewhere and maybe you can give them a referral to someone else. You could conceptualize and articulate it as an informed consent (to treatment) issue. You have made your initial diagnostic determination and have some ideas about treatment pathway/procedures and have shared them with your patient. Your patient objects to your findings and/or offered therapeutic procedures. That's their right. So, at that point, technically, they are not giving you informed consent to proceed. At that point, referral to another provider makes sense and is the ethical course of action.

If they are not even going to accept their role as your patient, how is psychotherapy/treatment ever going to work with them? They are just going to continue to adopt a superior posture with you and try to criticize everything you try to implement with them or invite them to do that is therapeutic.

I want to make it clear that I'm not minimizing your dilemma here...it is definitely a delicate/tough situation, especially considering your practice setting, revenue model, supervisors, etc. But I think we get to have some boundaries with patients on things like this. When I have to, for example, diagnose something other than PTSD (with veterans who are clearly in my office to pick up their diagnosis of PTSD on their way to service connection [but who can't convincingly present as actually having PTSD well enough]), I am ready for them to object/question my diagnostic workup. I do give them some articulation of how I ruled out the condition but I do not get in a long drawn-out debate with them about it. One of the problems with psychiatric diagnoses is that they are almost always entirely based on symptom self-report at the end of the day. I mean, you can use objective tests (MMPI/PAI) and stuff to see if they blow the validity scales out of the water or whatever but in my environment we cannot use these routinely.

Many of these people have what I would term Adult Developmental Disorder (never grew up) and are adult children/infants developmentally. It isn't in the DSM but it exists.

 

[Fan_of_Meehl]

I’m having a difficult time lately working in this field. Every adult who comes through my door has seen Tik Tok Videos, YouTube Videos, and read Unmasking Autism (which they claim finally explains their whole life’s struggle). They all don’t make eye contact and look in many ways to be autistic. Certainly, they have crafted their life histories to match DSM-5 criteria, and many give me written documents relating their traits to the DSM-5. It is hard to interview parents because most have some objection like childhood emotional abuse or a lack of relationship with the parents. If you tell them they don’t meet the criteria for autism, they cry, yell at you, and tell you you don’t understand masking.

How do you handle this?

By the way, are they doing this (do you think) to qualify for 'disability' for autism or something?

I had a (very cool) veteran patient one time (who actually did have PTSD) and he said that he and his veteran buddies (observing the rampant over-diagnosis of MH conditions and the 'pride' that people seem to have these days as presenting as having one) said that they wanted to start a 'bring back the stigma' campaign. He was only half-joking.

 

[cara susanna]

I think all you can do is validate the person's frustration that they don't have their "easy" answer, and explain that just because it isn't autism doesn't mean it isn't very difficult or impactful. That's what I do when I tell people they don't meet criteria for PTSD. Sometimes they still get mad and yell at me or storm out, but it's not like I can really do anything about that - I'm not going to give them a diagnosis they don't have.

 

[romanticscience]

It's funny you start this thread. I had one today. I've been starting to consider "autism" as any other disorder which can lie on a dissociative spectrum (cogiform--factitious) and consider the underlying personality dynamics. For instance, in someone with narcissism, this "factitious autism" may provide a defense against shame (You're upset with me? My autism made me do it!"), the same as pain or conversion symptoms have a dynamic utility. Just my $0.02

I'm moving past the apparent conflict, giving into a battle in "accepting the diagnosis," and appreciating the vulnerability. That is, managing the countertransference that comes from my opinion as a doctor being devalued.

Now, if it's ADHD and stimulants are at stake, that's another story!

 

[borne_before]

This stuff bothers me too. I see it from a parent or, rarely a teen, who really want an autism diagnosis. Shoot, I even had a board complaint where I did not diagnose autism (the kid had a trauma hx).

Autism is a very loaded diagnoses these days. It can mean getting Social Security, extra services, and having a really nice story that succinctly summarizes why someone's life sucks or they are not the person they want to be or why they are deficient someway. People can get really attached to that conceptualized story - leading to self-diagnostic overshadowing.

I spent a long time processing this with my lawyer, who is also a licensed psychologist, about ways to avoid this in the future. Echoing fan_of_meehl, I started to ask the following questions, especially when I get that vibe from a parent:

• "How would that affect you if the data points to different diagnosis?"
• "What would that mean for you?
• “What would be the best outcome for you”
• “Would you feel disappointed if it didn’t include autism diagnosis?"

And based on their answers to those questions, I think about fit. Saying something like "I am wondering if we are on the same page here, and I need to be clear that therapy/evaluations work only if we work together on figuring out what is going on. The purposes of psychology and any science are to describe, explain, and to influence outcomes. Those goals are diminished if I can't use my training and clinical knowledge to help you because you're very attached to an autism diagnosis and haven't considered other diagnostic labels because you're not trained in psychology, nothing is wrong with you and you're not a problem to solve, and maybe we can focus on tweaking some things to help you live a better, more meaningful, life."

It's a really great feeling to set a boundary with parent or teen who think that this process, the process of evaluation, is just a rubber stamp.

Being more selective about patients has cured my burn out! We just can't help everybody.

Honestly, a lot of the time, those questions, this discussion, are really good thing therapeutically. The patient/parent/teen is often not consciously aware of what they are doing too. If the defenses come up hard, then it's best to refer out. "You know, I am committed to helping you find a therapist, but I just don't think we're on the same page here and I think you might find a better fit elsewhere. Would you like a referral?"

You're not being mean, you're being a good psych if you don't validate their diagnosis.

Another fun question to ask a patient who is very attached to a label or story is "Pretend you have a jar of red jam. Let's say it's labeled strawberry jam. If you slap a sticker on that jar that says "grape jam," does it do anything to change the contents of the jam? What if we put a label on that says marmalade? What if the first label was wrong? What if it was mislabeled in the first place and it's actually the superior raspberry jam? Strawberry and raspberry jam are pretty close visually, but taste pretty differently? Mental disorders often have overlap and that's where my training steps in." Then we can discuss the two mountain metaphor of therapy.

 

[aim-agm]

I think all you can do is validate the person's frustration that they don't have their "easy" answer, and explain that just because it isn't autism doesn't mean it isn't very difficult or impactful. That's what I do when I tell people they don't meet criteria for PTSD. Sometimes they still get mad and yell at me or storm out, but it's not like I can really do anything about that - I'm not going to give them a diagnosis they don't have.

I think the message/attitude of "I care about your distress, and want to accurately diagnose the cause so I can best tailor treatment to help you" tends to be very helpful...and when it doesn't help it tells you a lot about the patient.

A helpful framing when not making an autism diagnosis specifically* is "Congratulations! You don't have a neurodevelopmental impairment which I can't fix but more help you deal with and compensate for, which also places you at risk for serious events such as catatonia, and which you would have significant probability of passing on to your children. You have [anxiety, depression, personality disorder, etc.], for which there are very effective treatments and cure is a reasonable expectation."

 

[smalltownpsych]

It wasn’t really a problem back in the DSM-IV days. These types of patients would say they were a little bit “Aspie” and didn’t really care that much about the diagnosis other than to understand how they processed information and improve social-emotional functioning. I still do the same work with them and they can call it whatever they want. If they really want a official diagnosis, they can get it from someone else. I am not going to get too worked up over psychiatry’s reductionistic and ever-shifting labels of complex neurodevelopmental phenomena.

 

[cara susanna]

I think it's also just not understanding how much overlap there is between MH diagnoses, or even just personality traits that can be similar. I'm in a lot of fandom groups and the amounts of "x character (who also has childhood trauma and a host of other things that could explain their behavioral patterns) has autism" is just staggering.

 

[psychma]

I appreciate everyone’s responses. I’ve read through this thread once and plan on rereading it. So much good information. I don’t understand why people want an autism diagnosis. It doesn’t seem to be for disability. Most of these people feel they haven’t fit in their whole life and they have already explored neurodivergent communities where they are accepted. It’s bananas. I miss working with kiddos, though sometimes parents were looking for autism diagnoses.

Don’t get me started on ADHD. Everyone is looking for their legal drugs. I can’t begin to say how many people get comfortable during the intake and confess to taking their “friend’s” Ritalin with miraculous results.

 

[aim-agm]

I don’t understand why people want an autism diagnosis... Most of these people feel they haven’t fit in their whole life and they have already explored neurodivergent communities where they are accepted.

I think you answered your own question. The diagnosis would cement their acceptance into a community. It would also provide absolution: explanation for their struggles that isn't their fault and removes the onus of needing to change. That is part of the disconnect - when you say they don't have autism, to them you aren't a clinician providing treatment but instead like a priest rejecting their confession.

 

[MCParent]

Some of the old timers should tell us about how they handled people coming in presenting with MPD, satanic ritual abuse, and alien abduction. Many parallels.

 

[Fan_of_Meehl]

I think it's also just not understanding how much overlap there is between MH diagnoses, or even just personality traits that can be similar. I'm in a lot of fandom groups and the amounts of "x character (who also has childhood trauma and a host of other things that could explain their behavioral patterns) has autism" is just staggering.

The reification of diagnostic categories in mental health as 'natural kinds' is so flawed.

 

[Fan_of_Meehl]

I appreciate everyone’s responses. I’ve read through this thread once and plan on rereading it. So much good information. I don’t understand why people want an autism diagnosis. It doesn’t seem to be for disability. Most of these people feel they haven’t fit in their whole life and they have already explored neurodivergent communities where they are accepted. It’s bananas. I miss working with kiddos, though sometimes parents were looking for autism diagnoses.

Don’t get me started on ADHD. Everyone is looking for their legal drugs. I can’t begin to say how many people get comfortable during the intake and confess to taking their “friend’s” Ritalin with miraculous results.

"Some of these people feel that they haven't fit in their whole life."

Me too. Join the club.

 

[cara susanna]

Yup, there is a very flourishing and supportive online autism community.

 

[Ollie123]

I genuinely laughed at the "Bring back the stigma" campaign. It is terrible, but also I kinda get it? If you scroll through reddit, it seems like around 90% of posters have autism, ADHD or trauma and feel the need to discuss this at length in every post regardless of whether or not it has anything-at-all to do with the topic at hand. I truly do not understand the attachment people form to these things, but it is becoming very much mainstream. In many cases, I think people really do want the diagnosis just so they can be "allowed into the club" so to speak.

 

[Ollie123]

Yup, there is a very flourishing and supportive online autism community.

I wonder what proportion of community members have had an evaluation and I wonder what proportion of those have actually had a proper evaluation vs rubber-stamp.

 

[psychma]

I wonder what proportion of community members have had an evaluation and I wonder what proportion of those have actually had a proper evaluation vs rubber-stamp.

Many are self-diagnosed. Within the autism community, there is the saying that self-diagnosis is valid.

 

[singasongofjoy]

Apologies in advance for the super long post; this topic is an ever-growing bee in my bonnet as our waitlist for adults has gotten to the point of being several years long at our current rate and we are looking to substantially change the criteria of who gets considered for the waitlist and coming up with some alternate formats for some of the folks on the current list. (If anyone else's clinic happens to be doing the same and would like to brainstorm /share ideas together, please DM me!)

I have had some adults come in for the interview angling for an ASD dx after being all over tik tock and whatnot but it's obviously not ASD and they've already gotten a previous ADHD dx -- I've pulled the angle of how I am glad the neurodivergent concept is getting more awareness more broadly and how I wish people understood the vast array of differences that overlap amongst various diagnostic categories because wouldn't they have felt more validated as a kid if folks were aware that ADHD looks like more than distractibility and high energy-- (e.g., hyperfocus, sensory aversions, some types of stereotyped movements are also v common-does not automatically mean autism!) There were 2 recent cases in particular that didn't think would accept the no to ASD followed by that line but they went off fired up about directing their energy back at a diagnosis they already had from someone else (or content with considering themselves neurodivergent more broadly) and dropped the drive for ASD, so I could give that eval slot to someone who needed it.

I do have a case on Monday where I am doubtful the adult is going to accept my VERY probable non-ASD dx though (typically I would decline to see them after the interview but this one has some other extenuating circumstances). Early history is weak and consistent with ADHD but sufficient to get past our first weed-out point (requiring some sort of early history). If they are not able to accept a no (they're already referring to themselves as autistic) my primary bullet point will be pulled straight from the DSM:

1. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

Her reported impairment in current functioning consists of: 1. being unemployed (due to a choice to homeschool) and 2. bad social communication specifically with "narcissistic a-hole" soon to be ex husband (isn't narcissism all over tik tok now too?) with the separation being the factor that makes unemployment problematic. Otherwise she essentially described herself as a happy introvert who sometimes goes out with friends and manages non-ex-husband relationships well even if she isn't the one to initiate them, and doesn't like small talk. (so... like a sizeable portion of the typical population). I can already hear the arguments she might make but regardless i can't make the argument that symptoms are causing current clinically significant impairment. She's not even really looking for services other than maybe some executive functioning coaching type focus (and she already has an ADHD dx).

If it comes down to it, I state exactly why they don't meet the criteria, make that explicit in my report writeup, and tell them they are free to self-identify in their personal life however they want -- that is completely unrelated to what they are paying me for, which is my professional opinion on if they meet this set of criteria and I am not going to undermine my reputation by claiming they meet the criteria of a disorder according to the specific criteria my license and their insurance coverage etc. is tied to.

For people who have the thought that a diagnosis is going to get them disability or other services, I clarify early on that there is a whole different set of criteria for whether they deem someone qualifies for benefits (e.g., concrete evidence of very substantial impairment in at least 3/7 domains of functioning or whatever, varies by program/setting). Even if i gave them a diagnosis the label means little to nothing in that regard.

All that being said, I have had a few folks (almost all women or non-cis gendered) who started considering ASD might be the better explanation for their difficulties after seeing tik tok and they were in fact correct - but those are few and far between, and they also clearly have had related impairment in functioning. So it does happen. But it can be difficult to figure out how to weed out one from the other at intake/referral... somethings gotta change. It's a pickle.

 

[cara susanna]

I genuinely laughed at the "Bring back the stigma" campaign. It is terrible, but also I kinda get it? If you scroll through reddit, it seems like around 90% of posters have autism, ADHD or trauma and feel the need to discuss this at length in every post regardless of whether or not it has anything-at-all to do with the topic at hand. I truly do not understand the attachment people form to these things, but it is becoming very much mainstream. In many cases, I think people really do want the diagnosis just so they can be "allowed into the club" so to speak.

Not just trauma, complex trauma. Regular PTSD isn't good enough anymore

 

[singasongofjoy]

Regarding the waitlist problem and who gets put on the waitlists for adults now that there is this huge increase... ideas, anyone, on good ways to triage from the outset?

Like how do I figure out well before the diagnostic interview who has genuine significant impairment (but may have some difficulty articulating it) and could benefit from VR services or whatnot - versus those this thread is referring to?

I wish i could figure out how to identify that second group, maybe have some kind of seminar on neurodiversity more broadly and/or give them handouts with a variety of resources (websites, books, podcasts related to various aspects of neurodiversity etc) and send them on their way - possibly with a list of other psychologists in the area that do evals and what insurances they take - to keep them off our waitlist so I can have time to actually get to the evals for that first group.

 

[Fan_of_Meehl]

I wonder what proportion of community members have had an evaluation and I wonder what proportion of those have actually had a proper evaluation vs rubber-stamp.

And plenty (perhaps the majority?) of veterans with PTSD believe that it isn't a mental 'disorder.'

But are 'disabled' by it.

Orwell wrote about 'doublethink' and 'doublespeak' in his 1984 novel and the VA system is fluent in both.

 

[Fan_of_Meehl]

Not just trauma, complex trauma. Regular PTSD isn't good enough anymore

Some of the most valid/hardcore cases of PTSD have 'stuck points' that they 'don't deserve' the diagnosis/label of PTSD. These tend to be the best candidates for evidence-based therapies (e.g., CPT).

 

[WisNeuro]

Not just trauma, complex trauma. Regular PTSD isn't good enough anymore

Just wait until we have Super Complex Antibiotic Resistant PTSD, with Menthol.

 

[Fan_of_Meehl]

Not just trauma, complex trauma. Regular PTSD isn't good enough anymore

LOL, as if 'vanilla' PTSD isn't plenty 'complex' as a psychopathological phenomenon.

 

[aim-agm]

Regarding the waitlist problem and who gets put on the waitlists for adults now that there is this huge increase... ideas, anyone, on good ways to triage from the outset?

Like how do I figure out well before the diagnostic interview who has genuine significant impairment (but may have some difficulty articulating it) and could benefit from VR services or whatnot - versus those this thread is referring to?

Maybe screen both level of dysfunction and level of function?
+ dysfunction, - function: more likely to have genuine significant impairment
- dysfunction, - function: may have impairment but trouble expressing it
- dysfunction, +function: more likely to not have significant impairment
+ dysfunction, +function: more likely to have tik-tok syndrome. may have impairment, but false negative screening isn't as bad an outcome compared to poorly functioning group

 

[Shiori]

I usually ask them what resources they're wanting access to when they're wanting an assessment. 9/10 times, the resource is available without the autism label, and I have surprisingly gotten a lot of movement this way. If they're not looking for a specific resource, I ask what the benefit is of the diagnosis. This often gives a lot of space for the direction of the conversation to change, and the client is able to give me the source of their distress. I find disarming the power an Autism diagnosis much easier than ADHD. The benefits aren't nearly as enticing.

 

[tr]

I usually ask them what resources they're wanting access to when they're wanting an assessment. 9/10 times, the resource is available without the autism label, and I have surprisingly gotten a lot of movement this way. If they're not looking for a specific resource, I ask what the benefit is of the diagnosis. This often gives a lot of space for the direction of the conversation to change, and the client is able to give me the source of their distress. I find disarming the power an Autism diagnosis much easier than ADHD. The benefits aren't nearly as enticing.

I've had this experience a lot too. The motivation for seeking the diagnosis really stymies me. It doesn't seem to be like the ADHD-wannabees who are seeking a specific drug. It often seems more like they expect that the label will come with some exciting new intervention they haven't heard of that will be the key to all their problems. I guess it could be seeking community as well, as mentioned by a couple of posters up above.

But I agree that often when I lay it out for them that there isn't some special magic intervention the ASD diagnosis is going to unlock, that will often reduce the intensity of the patient's focus on the diagnosis.

 

[futureapppsy2]

I genuinely laughed at the "Bring back the stigma" campaign. It is terrible, but also I kinda get it? If you scroll through reddit, it seems like around 90% of posters have autism, ADHD or trauma and feel the need to discuss this at length in every post regardless of whether or not it has anything-at-all to do with the topic at hand. I truly do not understand the attachment people form to these things, but it is becoming very much mainstream. In many cases, I think people really do want the diagnosis just so they can be "allowed into the club" so to speak.

I think a lot of it is that autism, ADHD, and trauma have had really good “PR campaigns” over the past decade or so—autism and ADHD aren’t seen as icky mental illnesses or disabilities but rather neurodiversities that just mean that your brain is more special than everyone else’s. Ironically, I think this has increased ableism from people with autism and ADHD, where you see a lot more “I’m not disabled, I’m neurodiverse!” rhetoric, while simultaneously wanting protections as a disabled person (similar to the Deaf community in a lot of ways). I also think that there are some people who self-declare autism as a way to be rude but not blamed for it (which just harms actually autistic people). Trauma, autism, and ADHD tend to garner a lot more empathy and community in places than other diagnoses, so people who want that empathy really want them.

 

[borne_before]

Regarding the waitlist problem and who gets put on the waitlists for adults now that there is this huge increase... ideas, anyone, on good ways to triage from the outset?

Like how do I figure out well before the diagnostic interview who has genuine significant impairment (but may have some difficulty articulating it) and could benefit from VR services or whatnot - versus those this thread is referring to?

I wish i could figure out how to identify that second group, maybe have some kind of seminar on neurodiversity more broadly and/or give them handouts with a variety of resources (websites, books, podcasts related to various aspects of neurodiversity etc) and send them on their way - possibly with a list of other psychologists in the area that do evals and what insurances they take - to keep them off our waitlist so I can have time to actually get to the evals for that first group.

In my pediatric clinic, if I see someone on my schedule, who is not likely to have ASD, based on age of referral, level of functioning, etc. I'll call the parent and say "I specialize in severe autism and kids under the age ten and my training/evaluations mostly focus helping those individuals obtain behavioral therapy and services from the department of developmental disabilities. At my clinic, you will see a lot of kids using wheelchairs, nonverbal people, kids with serious and visible chronic health conditions. So I apologize, but I don't think you're going to get what you want here, I think XYZ and would be a good fit."

I also want to shout "you selfish fool, don't you understand that you're trying to take resources away from nonverbal two year olds? Stop playing pretend, there are kids out there who need a diagnosis and are waiting while you masterbate over a diagnosis."

How to screen? Does person have a job? Married, etc. Then they probably don't have autism. Also, ask if theyd be willing to allow you to include their elderly parents in the eval so you can see what they were like as toddlers. Many will self-screen out.

 

[PsychSupreme]

I appreciate everyone’s responses. I’ve read through this thread once and plan on rereading it. So much good information. I don’t understand why people want an autism diagnosis. It doesn’t seem to be for disability. Most of these people feel they haven’t fit in their whole life and they have already explored neurodivergent communities where they are accepted. It’s bananas. I miss working with kiddos, though sometimes parents were looking for autism diagnoses.

Don’t get me started on ADHD. Everyone is looking for their legal drugs. I can’t begin to say how many people get comfortable during the intake and confess to taking their “friend’s” Ritalin with miraculous results.

My thing about the "adult ADHD" phenomenon is--If you have made it to your early 30s and you have a job, kids, and a house, and all of these things are being taken care of (maybe with a little stress and some procrastination, congrats, you're human), are you really experiencing enough dysfunction to warrant this diagnosis? You made it through school, college, and nursing rotations, but your life never made sense until someone (probably a nurse practitioner or social worker, maybe the third or fourth clinician you've consulted after not getting you the dx you wanted) told you that you have ADHD and you started taking stimulants? Like damn, I'm pretty sure everyone's life would be on easy mode if we all took low doses of stimulants every day--positive medication response is not a diagnostic indicator! Lol

I'm not saying adult ADHD doesn't exist, that some people don't slip through the cracks as adolescents, and that all adult ADHD diagnoses are disingenuous stimulant seekers, but it does seem like a lot of very bad diagnostic practices have taken hold, and that it has become way too easy to shop around for a clinician who will give you the label you want. I also wonder how much of this is driven by this unrealistic expectation that life is supposed to be...easy, or free of adversity. Like the minute you graduate HS and start making B+ grades in college, suddenly it's ADHD or depression or anxiety because "I've always made As! It must be mental health issues!" Like no, life just gets harder with age and growing responsibilities. We all get sad, we all feel anxious, we all engage in avoidance behaviors at times...welcome to the club we all like to call Homo sapiens sapiens! Anyway, again, not to belittle the subjective experiences of other people--these issues absolutely exist and absolutely affect real people, but our focus on catering to the "worried but well" has really stretched mental health resources very thin. As someone who works in SMI/psychosis research, it's a little maddening to see people with severe mental health problems struggling to find services when there are tons of clinicians out there who are happy to work with affluent, mostly well people who have a bit of subclinical anxiety or depression symptoms.

Monday rant over.

 

[Ollie123]

I think a lot of it is that autism, ADHD, and trauma have had really good “PR campaigns” over the past decade or so—autism and ADHD aren’t seen as icky mental illnesses or disabilities but rather neurodiversities that just mean that your brain is more special than everyone else’s. Ironically, I think this has increased ableism from people with autism and ADHD, where you see a lot more “I’m not disabled, I’m neurodiverse!” rhetoric, while simultaneously wanting protections as a disabled person (similar to the Deaf community in a lot of ways). I also think that there are some people who self-declare autism as a way to be rude but not blamed for it (which just harms actually autistic people). Trauma, autism, and ADHD tend to garner a lot more empathy and community in places than other diagnoses, so people who want that empathy really want them.

Agreed. I also definitely can see this having negative effects on ableism as the "prototype" in many people's minds shifts to the introverted person with some eccentric tendencies and/or unusual interests who in no way meets criteria for autism were it not for the current social environment. No one seems to "want" high-severity autism (completely non-verbal, near-constant uncontrollable stimming, etc.). I'm also curious how much acceptance these folks would find within these communities.

I see some parallels to several patient-led SMI organizations I became loosely familiar with on internship. The great irony is that for all their talk, they were without exception extraordinarily high-functioning and ironically seemed extremely intolerant of low-functioning or poorly controlled SMI. Their advocacy was clearly aimed along the lines of "Don't judge me for needing occasional time off when my meds are adjusted" versus the challenges those with more severe forms faced. And I support the above and I do think we need both, but I always wondered the implications of social rejection from these groups by lower-functioning individuals.

I'm quite removed from this world, but wonder what parallels we are likely to see to that in the autism/ADHD space moving forward.

 

[clausewitz2]

Agreed. I also definitely can see this having negative effects on ableism as the "prototype" in many people's minds shifts to the introverted person with some eccentric tendencies and/or unusual interests who in no way meets criteria for autism were it not for the current social environment. No one seems to "want" high-severity autism (completely non-verbal, near-constant uncontrollable stimming, etc.). I'm also curious how much acceptance these folks would find within these communities.

I see some parallels to several patient-led SMI organizations I became loosely familiar with on internship. The great irony is that for all their talk, they were without exception extraordinarily high-functioning and ironically seemed extremely intolerant of low-functioning or poorly controlled SMI. Their advocacy was clearly aimed along the lines of "Don't judge me for needing occasional time off when my meds are adjusted" versus the challenges those with more severe forms faced. And I support the above and I do think we need both, but I always wondered the implications of social rejection from these groups by lower-functioning individuals.

I'm quite removed from this world, but wonder what parallels we are likely to see to that in the autism/ADHD space moving forward.

"It is great that you are a professor of philosophy who has published several books, but maybe, just maybe, policies and programs aimed at you will not actually be tremendously helpful for someone who camps under a bridge in December because it keeps the Mafia assassins from finding them and won't take insulin because they have a horse pancreas."

 

[Ollie123]

"It is great that you are a professor of philosophy who has published several books, but maybe, just maybe, policies and programs aimed at you will not actually be tremendously helpful for someone who camps under a bridge in December because it keeps the Mafia assassins from finding them and won't take insulin because they have a horse pancreas."

And more to my point - it can't feel very good when the "Let's support people with mental illness" club decides you are crazy and they don't want you around. So maybe carefully consider the implications of this in your organizational structure and advocacy efforts to avoid any iatrogenic effects.

Note that I'm definitely not saying all (or even necessarily any) autism advocacy falls into this space. With the way things are going though, I do worry about this becoming an issue...

 

[clausewitz2]

And more to my point - it can't feel very good when the "Let's support people with mental illness" club decides you are crazy and they don't want you around. So maybe carefully consider the implications of this in your organizational structure and advocacy efforts to avoid any iatrogenic effects.

Note that I'm definitely not saying all (or even necessarily any) autism advocacy falls into this space. With the way things are going though, I do worry about this becoming an issue...

Very on point and short post from someone who has been involuntarily hospitalized on more than one occasion on precisely this tendency:

Here's a Little Rosetta Stone for the TikTok Era of Mental Health

Very briefly. This is just exactly it, right? This is, in one brief interaction, everything that I’ve been talking about. Someone expresses shock at what’s a well-known (and deeply injurious) symptom of a psychiatric illness. Someone else points out that it’s in fact a common symptom. The other...

freddiedeboer.substack.com

 

[futureapppsy2]

Very on point and short post from someone who has been involuntarily hospitalized on more than one occasion on precisely this tendency:

Here's a Little Rosetta Stone for the TikTok Era of Mental Health

Very briefly. This is just exactly it, right? This is, in one brief interaction, everything that I’ve been talking about. Someone expresses shock at what’s a well-known (and deeply injurious) symptom of a psychiatric illness. Someone else points out that it’s in fact a common symptom. The other...

freddiedeboer.substack.com

Eh, I have a lot of issues with their language there--yes, mental illnesses are bad, like any other illness (I don't think anyone who's ever experienced, say, clinical depression would recommend it nor would would anyone who's experienced, say, pneumonia) but that framing, along with the references the authors makes to violent or horrible people, quickly leads to "people with mental illnesses are bad and dangerous" when we that has been shown repeatedly that people with SPMI are far more likely to be the victims of violence than the perpetrators of it (except when active substance use is going on). Also, I'm so tired of people say that bigots must be mentally ill--people are bigoted for lots of reasons, including just loving oppressing other people.

 

[clausewitz2]

Eh, I have a lot of issues with their language there--yes, mental illnesses are bad, like any other illness (I don't think anyone who's ever experienced, say, clinical depression would recommend it nor would would anyone who's experienced, say, pneumonia) but that framing, along with the references the authors makes to violent or horrible people, quickly leads to "people with mental illnesses are bad and dangerous" when we that has been shown repeatedly that people with SPMI are far more likely to be the victims of violence than the perpetrators of it (except when active substance use is going on). Also, I'm so tired of people say that bigots must be mentally ill--people are bigoted for lots of reasons, including just loving oppressing other people.

Yeah the author has some strong opinions about it because of their own experience which involves being psychotically convinced they needed to murder several people and very publicly accusing someone of sexual assault because of a delusional belief system involving the railroad police.

I don't read him at all as saying that bigots are mentally ill - he is saying that people who are mentally ill can also have problematic opinions and not particular conform to a particular kind of orthodoxy, and the Twitter post he cites is an example of a certain kind of online person arguing that someone who does something unpleasant or unpopular cannot possibly be mentally ill because nobody who is mentally ill does unpleasant or unpopular things. Because thinking that would be stigma, you see.

EDIT: I have a fair amount of respect for him because as someone who did some fairly awful things during a psychotic episode, he is very open about it and takes the stance that while yes, psychosis was definitely not irrelevant to why he did what he did, he also is absolutely the person who did them, and feels it's fair enough for someone to blame him for doing them.

 

[Ollie123]

people with SPMI are far more likely to be the victims of violence than the perpetrators of it (except when active substance use is going on).

This is a totally random aside, but do you know the original source for this? I've heard it since early graduate school, but its origins have been remarkably difficult to track down. I've always been curious to see the actual numbers/ORs. I've found a few papers, but nothing that feels like a solid source and some explicitly note this mantra (without citing!) indicating they were written offer.

It entails some flipped logic (i.e., someone with SMI could conceivably be much more likely to commit violent acts then the general population AND still more likely to be a victim of violence than a perpetrator) based on the way I usually see it phrased, but I've never been able to find the absolute numbers.

 

[smalltownpsych]

This is a totally random aside, but do you know the original source for this? I've heard it since early graduate school, but its origins have been remarkably difficult to track down. I've always been curious to see the actual numbers/ORs. I've found a few papers, but nothing that feels like a solid source and some explicitly note this mantra (without citing!) indicating they were written offer.

It entails some flipped logic (i.e., someone with SMI could conceivably be much more likely to commit violent acts then the general population AND still more likely to be a victim of violence than a perpetrator) based on the way I usually see it phrased, but I've never been able to find the absolute numbers.

I always have to like a psychologist questioning the source of “common knowledge“. That being said, based on my own experience working in community health and the legal system and jail, all at the same time. I don’t think it would be too difficult to see the differential in publicly available statistics and I dimly recall there being some back when I was taught this, but I would still tell any grad student to cover that in their lit review and not just state it as though everyone knows it and also think it is good to see if what we thought back then still holds up now or if there have been changes. I also think it might be important to compare primary substance use vs primary metal illness vs co-occuring.

 

[Shiori]

This is a totally random aside, but do you know the original source for this? I've heard it since early graduate school, but its origins have been remarkably difficult to track down. I've always been curious to see the actual numbers/ORs. I've found a few papers, but nothing that feels like a solid source and some explicitly note this mantra (without citing!) indicating they were written offer.

It entails some flipped logic (i.e., someone with SMI could conceivably be much more likely to commit violent acts then the general population AND still more likely to be a victim of violence than a perpetrator) based on the way I usually see it phrased, but I've never been able to find the absolute numbers.

You might enjoy Consensus: AI Search Engine for Research to help you quickly pull together the literature on this. You ask a general research question, and it gives article summaries, article stats, and links to the main article.

 

[PsyDr]

This is a totally random aside, but do you know the original source for this? I've heard it since early graduate school, but its origins have been remarkably difficult to track down. I've always been curious to see the actual numbers/ORs. I've found a few papers, but nothing that feels like a solid source and some explicitly note this mantra (without citing!) indicating they were written offer.

It entails some flipped logic (i.e., someone with SMI could conceivably be much more likely to commit violent acts then the general population AND still more likely to be a victim of violence than a perpetrator) based on the way I usually see it phrased, but I've never been able to find the absolute numbers.

The reference is:

Maden, T. (2004). "Violence, mental disorder and public protection." Psychiatry 3(11): 1-4.

It's like the research that says homeless people tend to have psychiatric illness, but then you see that the most common psychiatric illness is substance use disorder.

Gutwinski, S., et al. (2021). "The prevalence of mental disorders among homeless people in high-income countries: An updated systematic review and meta-regression analysis." PLOS Medicine 18(8): e1003750.

Or how they say that most bankruptcies are caused by medical bills, but then when you read the article the highest "medical costs" are time away from work, time away from work to take care of your spouse, etc.... which is really about not having decent savings, a decent employer, or decent disability insurance policy, and not really about medical bills.

Himmelstein, D. U., et al. (2009). "Medical bankruptcy in the United States, 2007: results of a national study." Am J Med 122(8): 741-746.

 

[futureapppsy2]

This is a totally random aside, but do you know the original source for this? I've heard it since early graduate school, but its origins have been remarkably difficult to track down. I've always been curious to see the actual numbers/ORs. I've found a few papers, but nothing that feels like a solid source and some explicitly note this mantra (without citing!) indicating they were written offer.

It entails some flipped logic (i.e., someone with SMI could conceivably be much more likely to commit violent acts then the general population AND still more likely to be a victim of violence than a perpetrator) based on the way I usually see it phrased, but I've never been able to find the absolute numbers.

Sure thing! The biggest study is the McArthur study (a book, but cited here): Violence and mental illness: an overview

Other studies show differing results, with some showing an increased relative risk (but still low absolute risk) of violence among people with SMI (although, again, most of the risk is attenuated by controlling for substance use): Schizophrenia, Substance Abuse, and Violent Crime and Mental disorder and violence: is there a relationship beyond substance use? - Social Psychiatry and Psychiatric Epidemiology The McArthur is considered the strongest in the field (or at least it was--this is adjunct to what I do [I'm more on the victimization side of things]). Here's a recent study on victimization rates: Crime Victimization in Adults With Severe Mental Illness

So, controlling for substance abuse really attenuates, even if it does not fully eliminate (which differs depending on the study, the literature seems to vary between "it does" and "it doesn't entirely but still accounts for a lot of the risk," with the latter being more common), the risk of violence by people with SMI. From a violence reduction perspective, we're best off a) intervening with other sociodemographic factors linked to violence regardless of mental illness, b) treating SUDs, and c) providing accessible mental healthcare to better catch and intervene early with those whose mental illnesses may be linked to violence down the line (which, again, is a small subset of a large population). But our conversations around violence and mental illness often center around "Mentally ill people are all likely to be violent--how do we force them out of society, but not in a way that we have to actually pay for their care? And how can we then ignore any violence committed by other people?"

 

[borne_before]

I usually ask them what resources they're wanting access to when they're wanting an assessment. 9/10 times, the resource is available without the autism label, and I have surprisingly gotten a lot of movement this way. If they're not looking for a specific resource, I ask what the benefit is of the diagnosis. This often gives a lot of space for the direction of the conversation to change, and the client is able to give me the source of their distress. I find disarming the power an Autism diagnosis much easier than ADHD. The benefits aren't nearly as enticing.

Could you please provide me with a script about how this might clinically go down?

Not being snarky or anything - I just find a script for this stuff helpful.

 

[Shiori]

Could you please provide me with a script about how this might clinically go down?

Not being snarky or anything - I just find a script for this stuff helpful.

I almost typed out a script and then ran out of a steam. Now I have a reason!

Client: Hey, I have been doing some reading, and I meet a lot of the criteria for ASD. I'm wondering if I can get tested?

Me: Okay, what's kinds of things are you noticing? There are different types of testing, and I want to get you to the right place.

Client: *lists hard, but non-ASD-specific symptoms*

Me: Yeah, I can see why you would want to get to the bottom of things. That sounds hard to deal with.
(then I ask more screening questions depending on how long I've worked with them to get at depression, loneliness, thwarted belongingness, etc.)

Me: So, based on your symptoms, it sounds like it can be a lot of things. Testing can be a pretty long process. Is there something specific you're hoping to gain? I might be able to connect you to the resource without a diagnosis in the meantime.
(This is easier because I work with Veterans who have access to all kinds of things.)

This is usually the meat of the session. I haven't gotten any specific resource requests yet. I'll ask about whether they need accommodations at work or school. Most of the time, they have a hard time relating to friends and family. This is where I introduce other options and share the pretty boring secret that even if they get a diagnosis, things probably won't look much different in the way of psychotherapy and meds.

Client: So nothing changes?

Me: Not really! We all show up in this world differently and excel in some time things and struggling with others. (I sometimes do a little self-disclosure about my anxiety and how the symptoms are beneficial sometimes and a hinderance other times). I always tailor the therapy to fit the person I'm talking to for that reason. Is there something you're wanting to change about therapy/recommendations I can make to the therapist? I am always happy to hear feedback.

Client: Not really. I just don't want to miss anything.

Me: I will say ASD is really tricky to diagnosis in adults because the symptoms are similar to a lot of diagnoses and sometimes look like just showing up as a different kind of human than the people around you. Will a label of ASD change anything with your relationships with friends and family?
(More meat!)

So far, in my short time as a clinician, the person has decided against wanting an assessment. With my folks wanting an ADHD assessment, this is where I suggest psychotherapy to work on their specific symptoms and recommend we revisit it after a few weeks of therapy. Then I can get some good observational data to make a more informed decision if they're still interested. I have had a couple of folks I have referred for ASD assessment just to better conceptualize their presentation and how it was impacting treatment.

I feel like this approach gives me a lot of flexibility to monitor symptoms and build a therapeutic relationship. I want to be warm and supportive, and I want to appropriately manage resources. I don't formally assess every veteran who thinks they might have PTSD either. Unfortunately, this hasn't been an issue for most of them because they'll just get the diagnosis with a PCL-5. That's a different script though.

 

[borne_before]

I almost typed out a script and then ran out of a steam. Now I have a reason!

Client: Hey, I have been doing some reading, and I meet a lot of the criteria for ASD. I'm wondering if I can get tested?

Me: Okay, what's kinds of things are you noticing? There are different types of testing, and I want to get you to the right place.

Client: *lists hard, but non-ASD-specific symptoms*

Me: Yeah, I can see why you would want to get to the bottom of things. That sounds hard to deal with.
(then I ask more screening questions depending on how long I've worked with them to get at depression, loneliness, thwarted belongingness, etc.)

Me: So, based on your symptoms, it sounds like it can be a lot of things. Testing can be a pretty long process. Is there something specific you're hoping to gain? I might be able to connect you to the resource without a diagnosis in the meantime.
(This is easier because I work with Veterans who have access to all kinds of things.)

This is usually the meat of the session. I haven't gotten any specific resource requests yet. I'll ask about whether they need accommodations at work or school. Most of the time, they have a hard time relating to friends and family. This is where I introduce other options and share the pretty boring secret that even if they get a diagnosis, things probably won't look much different in the way of psychotherapy and meds.

Client: So nothing changes?

Me: Not really! We all show up in this world differently and excel in some time things and struggling with others. (I sometimes do a little self-disclosure about my anxiety and how the symptoms are beneficial sometimes and a hinderance other times). I always tailor the therapy to fit the person I'm talking to for that reason. Is there something you're wanting to change about therapy/recommendations I can make to the therapist? I am always happy to hear feedback.

Client: Not really. I just don't want to miss anything.

Me: I will say ASD is really tricky to diagnosis in adults because the symptoms are similar to a lot of diagnoses and sometimes look like just showing up as a different kind of human than the people around you. Will a label of ASD change anything with your relationships with friends and family?
(More meat!)

So far, in my short time as a clinician, the person has decided against wanting an assessment. With my folks wanting an ADHD assessment, this is where I suggest psychotherapy to work on their specific symptoms and recommend we revisit it after a few weeks of therapy. Then I can get some good observational data to make a more informed decision if they're still interested. I have had a couple of folks I have referred for ASD assessment just to better conceptualize their presentation and how it was impacting treatment.

I feel like this approach gives me a lot of flexibility to monitor symptoms and build a therapeutic relationship. I want to be warm and supportive, and I want to appropriately manage resources. I don't formally assess every veteran who thinks they might have PTSD either. Unfortunately, this hasn't been an issue for most of them because they'll just get the diagnosis with a PCL-5. That's a different script though.

Dude. Thank you so much!

 

[AcronymAllergy]

I almost typed out a script and then ran out of a steam. Now I have a reason!

Client: Hey, I have been doing some reading, and I meet a lot of the criteria for ASD. I'm wondering if I can get tested?

Me: Okay, what's kinds of things are you noticing? There are different types of testing, and I want to get you to the right place.

Client: *lists hard, but non-ASD-specific symptoms*

Me: Yeah, I can see why you would want to get to the bottom of things. That sounds hard to deal with.
(then I ask more screening questions depending on how long I've worked with them to get at depression, loneliness, thwarted belongingness, etc.)

Me: So, based on your symptoms, it sounds like it can be a lot of things. Testing can be a pretty long process. Is there something specific you're hoping to gain? I might be able to connect you to the resource without a diagnosis in the meantime.
(This is easier because I work with Veterans who have access to all kinds of things.)

This is usually the meat of the session. I haven't gotten any specific resource requests yet. I'll ask about whether they need accommodations at work or school. Most of the time, they have a hard time relating to friends and family. This is where I introduce other options and share the pretty boring secret that even if they get a diagnosis, things probably won't look much different in the way of psychotherapy and meds.

Client: So nothing changes?

Me: Not really! We all show up in this world differently and excel in some time things and struggling with others. (I sometimes do a little self-disclosure about my anxiety and how the symptoms are beneficial sometimes and a hinderance other times). I always tailor the therapy to fit the person I'm talking to for that reason. Is there something you're wanting to change about therapy/recommendations I can make to the therapist? I am always happy to hear feedback.

Client: Not really. I just don't want to miss anything.

Me: I will say ASD is really tricky to diagnosis in adults because the symptoms are similar to a lot of diagnoses and sometimes look like just showing up as a different kind of human than the people around you. Will a label of ASD change anything with your relationships with friends and family?
(More meat!)

So far, in my short time as a clinician, the person has decided against wanting an assessment. With my folks wanting an ADHD assessment, this is where I suggest psychotherapy to work on their specific symptoms and recommend we revisit it after a few weeks of therapy. Then I can get some good observational data to make a more informed decision if they're still interested. I have had a couple of folks I have referred for ASD assessment just to better conceptualize their presentation and how it was impacting treatment.

I feel like this approach gives me a lot of flexibility to monitor symptoms and build a therapeutic relationship. I want to be warm and supportive, and I want to appropriately manage resources. I don't formally assess every veteran who thinks they might have PTSD either. Unfortunately, this hasn't been an issue for most of them because they'll just get the diagnosis with a PCL-5. That's a different script though.

This should be part of a chapter for assessment of neurodevelopmental disorders in adults in one of those wide-ranging psychotherapy treatment books

 

[borne_before]

This should be part of a chapter for assessment of neurodevelopmental disorders in adults in one of those wide-ranging psychotherapy treatment books

I would love a book of scripts for tough to have conversations! I'd contribute my mild ID spiel.

 

[psychma]

How about a script for “you do not meet the criteria for an autism diagnosis”? Any takers?

 

[cara susanna]

I don't have one for autism, but I have one for PTSD (or, rather, could write one up).

 

[borne_before]

How about a script for “you do not meet the criteria for an autism diagnosis”? Any takers?

This is what I put in my reports "While Rambo exhibits some symptoms that could be considered consistent with ASD (e.g., difficulty making friends, behavioral rigidity, sensory processing differences, etc.), he doesn’t demonstrate the pervasive deficits in the areas of social interactions, communication, and restricted/repetitive behaviors and interests that characterize ASD. In particular, Rambo showed a number of age-appropriate social skills during the assessment, including shared enjoyment, directed facial expressions, well-modulated eye contact, use of gestures, frequent social overtures, ability to easily establish rapport, interest in the examiner, and frequent sharing of information. His teacher/parents also reported appropriate gesture use, eye contact, and average frequencies of autism related symptoms on rating scales.

Nonetheless, Rambo exhibits a number of significant challenges in the areas of behavior, emotion regulation, and social skills. (elaborate with what's really going on here."

It's ridiculous how boilerplate and little tailoring that paragraph usually needs