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ASPartOfMe
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Joined: 25 Aug 2013
Age: 66
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10 May 2018, 1:38 am

Five years ago the DSM 5 manual came into effect subsuming most older diagnosis into Autism Spectrum disorder and creatinf a new Social Communication Pragmatic Disorder diagnosis. Before and after, even 5 years after the new manual we debate whether it was a good move. In the months following the then new manuals release on these pages many supporters of the old Asperger diagnosis figured the scientists would come to their senses and bring Aspergers back. They never did and now with revelations about Hans Asperger it is pretty safe to say Aspergers as a official diagnosis is not coming back. Now it is a time to look back and see what fears expectations came true or and what fears and expectations did not.


The DSM-5 has not improved services for autistic adult By Julia Bascom head of Autism Self Advocacy Network

Quote:
In early 2013, the then-emerging edition of the “Diagnostic and Statistical Manual of Mental Disorders” (DSM-5), proposed merging all autism diagnoses into a single category of ‘autism spectrum disorder.’

The Autistic Self Advocacy Network, the largest national organization run by and for autistic adults, strongly supported this move. In the view of the organization, where I now serve as executive director, the prior distinctions made no sense, did not reflect the experiences of autistic people and divided the efforts of advocates.

Critics of the unified definition feared that some people diagnosed with Asperger syndrome or pervasive developmental disorder-not otherwise specified (PDD-NOS) might not qualify for an autism diagnosis under the new criteria, and would be denied crucial assistance.

Five years on, that fear has proved unwarranted: Children have gained stronger legal rights and better opportunities for accessing services. ‘Autism’ is explicitly named in the Individuals with Disabilities Education Act, so having that diagnosis protects children from being denied services.

For adults, unfortunately, it’s a different story.

Services for autistic adults were always, and remain, woefully inadequate, leaving us without the supports we need to thrive.

The DSM-5 has done its part to unify us, but a manual cannot magically change laws, social barriers to diagnosis or misconceptions about what autism is.

One major obstacle is that the adult service system was designed to serve people with intellectual disabilities only. This requirement excludes most autistic adults.

It is tempting to assume that autistic people who speak fluently and have high intelligence quotients need less support than those who do not. But nothing could be further from the truth.

Autism is a developmental disability, and by definition, most of us need help on an ongoing basis. Some of us need that help only periodically, some need it every day, and some need it around the clock. Though the intensity of our needs varies, we will likely require roughly the same kinds of help, such as assistance with living in the community and with getting and keeping a job.

Eligibility for services such as transportation and employment assistance, as well as funding for housing, supersede the definitions in the DSM-5. Changing eligibility rules and new funding mechanisms would require new legislation, regardless of how autism is defined in the DSM.

Many people on the spectrum don’t even make it to a waiting list because they do not get a diagnosis in the first place. Women and girls, people of color, those from lower socioeconomic backgrounds, and those who do not speak English as a first language are all more likely to go undiagnosed or be to identified late in life in the U.S.

Here, too, the problem is not one that diagnostic criteria can fully solve, because it stems from diagnostic biases and societal and cultural barriers to medical care.


Roundtable: Debating diagnostic criteria for autism
Catherine Lord
Professor, Weill Cornell Medicine

Sally Rogers
Professor, University of California, Davis

David Skuse
Professor, University College London

In DSM-5, guidance on girls with autism is short but savvy
William Mandy is senior lecturer in clinical psychology at University College London

Quote:
The current version of the “Diagnostic and Statistical Manual of Mental Disorders,” the DSM-5, acknowledges how gender shapes autism more than any previous version of the manual has.

‘Gender-related diagnostic issues’ is its own section in the manual — but it is only two sentences long.

It states that the male-to-female ratio of autism diagnoses is 4-to-1 and that this may reflect an underdiagnosis of autistic girls and women, particularly those without intellectual disability. It suggests that this occurs “perhaps because of subtler manifestation of social and communication difficulties” in girls on the spectrum.

These circumspect statements represent an important step toward redressing a historic tendency in our field to overlook autistic women.

In the five years since the publication of the DSM-5, research into autism and gender has burgeoned. Given this new body of literature, is it time to update the diagnostic criteria?

New research suggests that the 4-to-1 male-to-female ratio of autism diagnoses does not accurately reflect the proportion of girls and women with autism. The DSM-5 could provide the real ratio (which is closer to 3-to-1), emphasizing that girls and women are underdiagnosed. There are also data supporting the idea that autism features change more dramatically over time in females than in males. But the evidence is not strong enough yet to code it in the DSM.

More important than updating the description of autism gender differences in DSM-5, however, is emphasizing the important implications of the text that is already there.

Last year, my group did a meta-analysis of prevalence studies. We confirmed that the male-to-female ratio for people with an autism diagnosis is indeed 4-to-1, but that the true ratio is closer to 3-to-1. The lower ratio emerges when researchers design studies to include undiagnosed autistic people.

A range of studies confirm this diagnostic bias against girls and women. For example, there is evidence that autistic girls need higher levels of autism traits and more co-occurring difficulties to come to clinical attention than boys on the spectrum. They also tend to be diagnosed later than boys.

What drives their under-identification? Here, again, the DSM-5 provides keen insight. Autism diagnostic criterion C states that although “symptoms must be present in the early developmental period,” these may be “masked by learned strategies in later life.” This accords with the broader principle in the DSM-5 that historic traits (that is, those that were once present but are currently absent) can count toward a diagnosis.

In the past five years, researchers have documented that many people on the spectrum learn to camouflage their traits. They may consciously suppress stimming behaviors in public or deliberately learn how to use certain gestures in social interactions. One person described this as “putting on my best normal.”

A second key idea expressed in the DSM-5 is that autism features may not be obvious early in life, but become overt only as social demands increase. Emerging evidence suggests that this pattern is especially relevant to females. Autistic women have reported in qualitative studies that their difficulties were manageable up until adolescence, when the social expectations increased dramatically.

In a new longitudinal study in the general population, we identified individuals with autism traits that became severe only in adolescence1. Girls were more likely than boys to show this developmental profile. If future research supports this idea, the DSM-5 might be amended to include features that show up in adolescence and are especially characteristic of the female autism phenotype.

Thus, the DSM-5 nicely captures an apparent paradox emerging from longitudinal studies of autism gender differences. On the one hand, the female phenotype is characterized by features that present in childhood but become less obvious over time due to camouflaging. On the other, many girls appear to show increasing impairment as they encounter the social complexities of adolescence.

It is widely accepted that autism varies greatly among people, but there is less awareness that it varies in individuals over time. Autism changes across the lifespan in ways that are partly related to sex and gender. The DSM-5 encourages diagnosticians to be sensitive to this fact.

For example, the DSM-5 criterion B3 describes a person who has “highly restricted, fixated interests.” Too often, diagnosticians expect these to be stereotypically male interests, such as trains and traffic lights. We would like to see evaluators think more broadly. For instance, many autistic girls are fixated on social activities such as studying psychology and anthropology, or on popular topics such as animals and fashion.

Whenever I read the DSM-5, I am struck by how prescient its gender-relevant statements are; they have held up well to research. A few changes may be justified to add evidential weight to ideas that are currently posed circumspectly. But even in its current form, the DSM-5 is compatible with the goal of correcting the diagnostic bias against girls and women.


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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman