Autism as an identity group/culture versus autism as medical/mental health condition?

[futureapppsy2]

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This came up briefly in another thread, and I thought it would be interesting to discuss. A lot of autistic self-advocates/autistic adults are increasingly conceptualizing autism as a benign aspect of diversity/identity that doesn't really need to be diagnosed or treated, hence the idea that "self-diagnosis" of autism is fine and valid ("if you identify as autistic, you are, even if a provider doesn't agree") as opposed to viewing autism as a medical or mental health condition where an individual actually has to meet the diagnosed criteria to be considered to have autism. As someone who takes a more minority model of disability in my work, I kind of get this but also kind of don't, because you can't just "decide" you have other conditions/disabilities (for example, you couldn't just decide that "identify" with cerebral palsy or that you "identify" with Deafness), minus the fringe "trans-abled" people, who are very poorly received in the disability community and widely viewed both in and outside it as malingering. I also worry that people identifying as autistic when they don't meet the diagnostic criteria could potentially lead to them not getting appropriate diagnoses or treatment for other conditions that they might actually have instead.

Thoughts?

 

[erg923]

It has the word "disorder" in it for a reason....

 

[WisNeuro]

It has the word "disorder" in it for a reason....

Being anything other than straight as a sexual identity was a "disorder" for some time. We know full well politics are involved in our diagnostic decision making at the expense of science all the time.

I am not a fan of the self-diagnosis. Especially for something as complex as ASD. There are a TON of other syndromes, many genetic diseases, that can mimic symptoms of autism. Accurate diagnosis and evaluation is necessary for identification of the issue, as well as the severity, which can guide treatment and accomodations.

On the flip side, I understand that these evals are not always easy to access, or reimbursed by insurance at certain points. But, I think the self-diagnosis issue causes more problems than it solves.

 

[ClinicalABA]

This is a rather multifaceted issue. I think that the author of the article cited in the original thread did a pretty good job of talking about how self-diagnosis can be an intermediary step for some for whom a more "official" diagnosis is not easily available (he did end up getting a diagnosis from a clinician). I would also add that, based on DSM-5 Criteria, the diagnosis can be made based on self- or other-report of symptoms. Also, many (most?) community based clinician working with adults doesn't have any specific training in the diagnosis of ASD and, in a lot of cases, would just be running down a symptom checklist. As was pointed out in the other thread, we don't want to assume that the clinician has been well trained in differentially diagnosing anything. let alone something they might not see a lot.

This is more your area of study @futureapppsy2, but has anything good ever came out of non-group members trying to limit historically marginalized groups attempts at self-identity? I think it really needs to be demonstrated empirically,, beyond a shadow of a doubt, that any self-diagnosing or using a "diagnosis" as an identity is harmful before we can have any informed opinions on the matter. The argument that "it keeps them from getting the help they need" is predicated on a few assumptions:

1. The "help" actually exists (and my observation is that ANY services for out-of-school aged individuals with an ASD dx are difficult-if not impossible- to find.
2. The "help" is actually beneficial. Are we really certain of what is the best approach, from a clinical psych perspective, for this very heterogeneous population?
3. Is the "help" needed? Can there be individuals who meet the dx criteria who either no longer need (or never really needed) any help. In my opinion (and experience) the goal of early services for people with an ASD dx is to make those services as unnecessary as possible. However, we do have reasonably strong evidence that ASD is related to certain differences in brain structure and, likely, function. Major impacts for most with the dx seem to be on HOW things (particularly social-related things) are learned, rather than WHAT things can be learned.
4. Is the "help" wanted? ASD group members- "officially" diagnosed or not- have the same capacity for informed decision making regarding their how to deal with what's going on in their lives.

I'm just not sure that there is compelling enough research either way for us, as professional psychologists, to say that A) self-diagnosis and ASD identify movements cause any problems (especially compared to the dominant and naturally occurring "no treatment" control): or B) that it is not more beneficial that "official" diagnosis and subsequent formal "therapies." That being the case, I think it's best viewed as a group of historically marginalized and mistreated people doing something that meets some important need for themselves. Until we can identify that need and a better way to address it (if at all), we should trust that what they are doing for themselves is important and meaningful.

 

[cara susanna]

My concern with mental health self-diagnosing is that mental health diagnosis seems so simple to the public, but in reality is far more complex. Differential is very difficult and something even professionals have trouble with.

 

[PsyDr]

Easy enough. Diagnosis requires impairment. If it is just an identity, then there are no accommodations benefits ever needed.

People are free to refuse treatment, unless they are unable to care for themselves, or are a threat. This is why the ADA has the reasonable standard. There is an understanding that the individual obtains a reasonable degree of treatment, and society does what it can from that starting point. A person with bilateral AKA cannot refuse to use prostheses or a wheelchair, and demand that grocery store workers carry them.

For ASD specifically, there is some merit to the idea that it might not be a disability in all settings.

 

[DrKeto]

This came up briefly in another thread, and I thought it would be interesting to discuss. A lot of autistic self-advocates/autistic adults are increasingly conceptualizing autism as a benign aspect of diversity/identity that doesn't really need to be diagnosed or treated, hence the idea that "self-diagnosis" of autism is fine and valid ("if you identify as autistic, you are, even if a provider doesn't agree") as opposed to viewing autism as a medical or mental health condition where an individual actually has to meet the diagnosed criteria to be considered to have autism. As someone who takes a more minority model of disability in my work, I kind of get this but also kind of don't, because you can't just "decide" you have other conditions/disabilities (for example, you couldn't just decide that "identify" with cerebral palsy or that you "identify" with Deafness), minus the fringe "trans-abled" people, who are very poorly received in the disability community and widely viewed both in and outside it as malingering. I also worry that people identifying as autistic when they don't meet the diagnostic criteria could potentially lead to them not getting appropriate diagnoses or treatment for other conditions that they might actually have instead.

Thoughts?

Interesting. I haven’t come across this issue of self-diagnosed autism, but it would certainly not be supported among most neuropsychologists, given the research. There are pretty specific associated neurocognitive profiles as well as bio markers. While there are varying severity levels and diversity among symptom constellations, diagnostic criteria must still be met.

 

[futureapppsy2]

Easy enough. Diagnosis requires impairment. If it is just an identity, then there are no accommodations benefits ever needed.

People are free to refuse treatment, unless they are unable to care for themselves, or are a threat. This is why the ADA has the reasonable standard. There is an understanding that the individual obtains a reasonable degree of treatment, and society does what it can from that starting point. A person with bilateral AKA cannot refuse to use prostheses or a wheelchair, and demand that grocery store workers carry them.

For ASD specifically, there is some merit to the idea that it might not be a disability in all settings.

The ADA doesn’t require treatment for protection under the law. There is a lot of very specific case law confirming this. It does allow institutions to refuse accommodations that pose unreasonable burdens (there’s a very high bar for this, though, especially for large companies, public institutions; post secondary institutions, etc) or for direct threat to others (again, a high bar here), but treatment of a disabling condition is never a requirement for protection, nor should it be, imo (because appropriate treatment is so individualized—prosthetic limbs aren’t the best choice for every person with an amputation, for example, and some people can’t tolerate certain medications or have life threatening complications from them).

 

[PsyDr]

The ADA doesn’t require treatment for protection under the law. There is a lot of very specific case law confirming this. It does allow institutions to refuse accommodations that pose unreasonable burdens (there’s a very high bar for this, though, especially for large companies, public institutions; post secondary institutions, etc) or for direct threat to others (again, a high bar here), but treatment of a disabling condition is never a requirement for protection, nor should it be, imo (because appropriate treatment is so individualized—prosthetic limbs aren’t the best choice for every person with an amputation, for example, and some people can’t tolerate certain medications or have life threatening complications from them).

There is case law that indicates that employers are not responsible for providing personal use items like wheelchairs. That is a treatment.

There is also specific case law about what is reasonable. Hence, I emphasized the term.

 

[Fan_of_Meehl]

My concern with mental health self-diagnosing is that mental health diagnosis seems so simple to the public, but in reality is far more complex. Differential is very difficult and something even professionals have trouble with.

Not to mention clear conflicts of interest.

 

[futureapppsy2]

There is case law that indicates that employers are not responsible for providing personal use items like wheelchairs. That is a treatment.

There is also specific case law about what is reasonable. Hence, I emphasized the term.

I didn't say that employers are responsible for providing treatment, personal assistant services, or "personal use AT" (though this can get a bit iffy, as they do provide, say, FM systems). But the notion that people have to get treatment for their disabling conditions to qualify for protections and accommodations under the ADA is factually incorrect. You can't say "I'm not accommodating that amputee because they should have a prosthetic limb" or "I'm not accommodating that person with ADHD because they should be on stimulants" or "I'm not accommodating that person with PTSD because they should be receiving CPT." The reasonableness of accommodations is always considered, but the persons' treatment history can't be part of that decision (one exception--totally correctable vision issues aren't considered a disability).

 

[PsyDr]

I didn't say that employers are responsible for providing treatment, personal assistant services, or "personal use AT" (though this can get a bit iffy, as they do provide, say, FM systems). But the notion that people have to get treatment for their disabling conditions to qualify for protections and accommodations under the ADA is factually incorrect. You can't say "I'm not accommodating that amputee because they should have a prosthetic limb" or "I'm not accommodating that person with ADHD because they should be on stimulants" or "I'm not accommodating that person with PTSD because they should be receiving CPT." The reasonableness of accommodations is always considered, but the persons' treatment history can't be part of that decision (one exception--totally correctable vision issues aren't considered a disability).

In my original response, I emphasized REASONABLENESS far over treatment. As I clearly indicated mobility assisting devices as treatment in my original example and how someone's demands based upon their own choices intersect with environmental demands to define reasonableness, I think we differ in what we consider treatment. ADA case has clearly ruled that lowering job performance quality or quantity is unreasonable. Likewise, ADA case law has clearly ruled that the employer is not responsible for personal use assistive equipment, consistent with what I called treatment.

There are many instances wherein ADA addresses treatment:

A. altering job performance is not a reasonable accommodation.
B. "treatment of" in consideration of diagnoses that are not disabling.
C. Substance use disorders qualifying for accommodations for treatment only.


In your example of an amputee with no prosthesis, I would not argue that one should fail to provide accommodations. I would argue that determining the reasonableness of the accommodation might be an issue.

 

[futureapppsy2]

In my original response, I emphasized REASONABLENESS far over treatment. As I clearly indicated mobility assisting devices as treatment in my original example and how someone's demands based upon their own choices intersect with environmental demands to define reasonableness, I think we differ in what we consider treatment. ADA case has clearly ruled that lowering job performance quality or quantity is unreasonable. Likewise, ADA case law has clearly ruled that the employer is not responsible for personal use assistive equipment, consistent with what I called treatment.

There are many instances wherein ADA addresses treatment:

A. altering job performance is not a reasonable accommodation.
B. "treatment of" in consideration of diagnoses that are not disabling.
C. Substance use disorders qualifying for accommodations for treatment only.


In your example of an amputee with no prosthesis, I would not argue that one should fail to provide accommodations. I would argue that determining the reasonableness of the accommodation might be an issue.

I'm legitimately confused here, because we seem to be misunderstanding each entirely across the board. I never said that job performance standards should be altered or that treatment should be covered by employers (in fact, I specifically stated in my second post that it is not). I did say that you can't use *if* someone has or hasn't gotten what you deem to be "reasonable" treatment of a condition in your determination of the reasonableness of an accommodation or if someone qualifies as disabled under the ADA. For example, you can't say "we're not providing sign language interpreters, even though we can afford them, because the person should have just gotten a cochlear implant" or "we're not providing a wheelchair ramp, even though we can afford it, because you as an amputee should use prosthesis instead" or "we're not allowing a service dog in our building because you should have learned to open doors yourself in physical therapy" or "we can't provide speech to text software, because your RA meds should allow you to type" or "you don't qualify for extended time on tests because your ADHD should be treated with stimulants."

I think we may be getting wires crossed here between medical "treatment" and "treatment" meaning how someone is responded to.[/QUOTE]

 

[PsyDr]

I'm legitimately confused here, because we seem to be misunderstanding each entirely across the board. I never said that job performance standards should be altered or that treatment should be covered by employers (in fact, I specifically stated in my second post that it is not). I did say that you can't use *if* someone has or hasn't gotten what you deem to be "reasonable" treatment of a condition in your determination of the reasonableness of an accommodation or if someone qualifies as disabled under the ADA. For example, you can't say "we're not providing sign language interpreters, even though we can afford them, because the person should have just gotten a cochlear implant" or "we're not providing a wheelchair ramp, even though we can afford it, because you as an amputee should use prosthesis instead" or "we're not allowing a service dog in our building because you should have learned to open doors yourself in physical therapy" or "we can't provide speech to text software, because your RA meds should allow you to type" or "you don't qualify for extended time on tests because your ADHD should be treated with stimulants."

I think we may be getting wires crossed here between medical "treatment" and "treatment" meaning how someone is responded to.

[/QUOTE]

I think this is more of a confusion than a true disagreement.

We seem to be at odds on:

1) How important we find the idea of "reasonableness"
2) How we conceptualize "treatment".
3) Where we are placing emphasis in our discussion: truly diagnosed vs. self diagnosis. (arguably this goes back to #1)


My broad point, relevant to the initial post, was that there is an assumption of reasonableness. I tend to believe that self diagnosis, in the context of avoidance of proper diagnosis, is largely motivated by perceived secondary gain. I also tend to believe that self diagnosis is unreasonable, and any requirements stemming from self diagnosis are unreasonable. To your credit, I am including diagnosis in the term "treatment" which is likely idiosyncratic and confusion inducing.

I largely agree with your points. However, I think that your starting point is vastly different than mine. If I understand you correctly, your examples seem to be starting from the assumption of valid diagnosis, and requests for reasonable accommodations. I am not.

My initial example was someone with an obvious valid diagnosis, with an obvious impairment, that was requesting unreasonable accommodations. The reason I used this example was to show there is a requirement for reasonableness, even in the context everything else being valid.

Going back to the original post: I think a lot of the diagnosis seeking behaviors would stop if there were no reinforcers.

 

[DynamicDidactic]

I think there are some people that say the same about ADHD.

If individuals with autism want to be viewed as not having a disorder, that is fine by me. I think people confuse the goal of diagnostic labels. They are not meant to add to stigma, but that is often the consequence. However, if you come to me needing assistance with social interactions and I need to charge an insurance companies I am going to have to apply a label.