Lancet Report: Momentum builds toward breaking up of ASD

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Making a separate diagnosis available for profound Autism seems to make sense...but I haven't heard of anything answering the question: Do Profound Autism and Mild Autism have different underlying causes, or are they just different levels of symptom severity for symptoms attributable to the same underlying cause?

The problems I see:
1. Between the "young man with no language, a low IQ, few functional abilities, and aggressive, dangerous behaviors" and the "college professor with social anxieties and some OCD", there is the whole, continuous, multi-dimentional spectrum of ASD conditions, so any cut-off will be arbitrary.
2. People on the spectrum very often have spiky ability profiles, which makes "severity" of their autism dependent on area/task to do. I can't learn to safely drive but I do quantum physics. Am I disabled or not?
3. Severity of autistic symptoms depends also on overall physical and mental health of a person and other factors not related to the autism itself. I've observed it in my daughter going from "just shy and a bit awkward" to fully disabled and mute and back to "just shy and awkward" depending on who was her main teacher at school (and, of course, how the teacher behaved towards her).

So, while in some contexts it makes sense to distinguish between various "autism severity levels", it does not invalidate the concept of autism spectrum.

On December 6th, a group of autism researchers commissioned by The Lancet released a report on the future of autism services and research. This report primarily deals with the need for better services and research for autistic people, including the need for individualized services, and research that prioritizes quality of life. Unfortunately, media coverage of this report has focused on a brief recommendation to create an administrative classification called “profound autism.” Articles about the report have focused on this recommendation, and some have used it to argue that “profound autism” should be a separate autism diagnosis, in spite of the fact that the report specifically says it is not being proposed as a diagnostic term. Autistic people are failed by this coverage. It is a shame that a report focused on the need to improve and research services and support for autistic people is being overshadowed by a sidebar recommendation to apply functioning labels to autistic people with the highest support needs — a recommendation which will fail to improve services or quality of life for these individuals.

Self-advocates with intellectual disabilities and AAC users have long spoken out against the harm caused by functioning labels like “severe autism” or “low-functioning” autism, as have parents of autistic people with the most significant support needs. “Profound autism” is just an attempt to rebrand the same harmful notion. The reality is that autistic people, just like people with Down Syndrome or Cerebral Palsy, have a wide range of abilities and support needs, for lots of different reasons. The Lancet Commission conflates needing 24/7 support with having a measured IQ of 50 or below or being nonspeaking, but this is a harmful oversimplification — for example, there are many autistic people who speak or who have higher IQs but who require around-the-clock services, and there are autistic AAC users who live independently. We also know that IQ tests are notoriously unreliable for autistic people, particularly nonspeaking autistics. Nor is it clear why the presence of co-occurring disabilities like intellectual disability or speech apraxia should result in a different label, when co-occurring disabilities are common in autistic people and already accounted for by the DSM.

Autistic people need and deserve better services, especially those of us with the highest needs — but the “profound autism” label doesn’t help. “Profound autism” doesn’t give us any actionable information about why a person needs support or what support they need. It doesn’t tell us if a person has speech apraxia or complex medical needs, or if the person needs access to AAC or specific mental health supports. It also doesn’t reflect what we know about people with significant developmental disabilities generally, which is that high expectations and inclusive services benefit everyone and we can’t predict what someone can achieve with the right support.

Instead of rehashing old, harmful arguments about functioning labels, we should focus on improving the services available to all autistic people — which is what the majority of the Lancet Commission report is actually about. Many autistic people with a wide range of needs go without any services, and even those of us with services too often lack the kind of robust, high-quality, individualized, and respectful supports that would truly enable us to live our best lives. To begin to address this, researchers and policymakers must focus on services that can improve quality of life. When a report directing researchers to do just that is derailed to promote functioning labels, this harms autistic people. We need media outlets — and autism organizations — to focus on recommendations that will truly make a difference in the lives of autistic people. Our community’s unmet needs are critical, and must not be pushed under the rug in favor of resurrecting harmful functioning labels once more. ASAN will continue to advocate for research and services that meet the needs, and promote the dignity, of all autistic people.

Functioning Labels Harm Autistic People - ASAN

As I said earlier in this thread “support needs” is a functioning label. How you do or do not function in society determines support needs.

Everyone knew what the old label ret*d meant but it was deemed offensive & replaced with the current one.

In 1998, a British doctor named Andrew Wakefield published a paper in the medical journal The Lancet claiming to have found a link between autism and the vaccine for mumps, measles, and rubella.

During the coronavirus pandemic, we’re seeing the consequences of that initial anti-vaccination scheme as it’s moved beyond autism discussions and become part of the scaremongering around the Covid-19 vaccine. And, inside the autism community, autistic people are being pitted against one another, in a scenario in which the only outcome is that everyone loses.

The antivax movement emerged out of the idea that autism was an enemy to be defeated, which lies in direct contrast to the neurodiversity movement and its focus on accepting and supporting autistic people (as well as those with many other disabilities). Today, that means that too many parents are getting the message that fighting for their kids, especially if their kids have high support needs, is in conflict with the neurodiversity movement led by many adult autistic self-advocates.

To make the situation worse, in December 2021, The Lancet—yes, the same journal that published Wakefield—set off a media firestorm when its report on the state of autism services included a proposal for a new label of “profound autism.” It created the label with the intention of establishing a category of autistic people that can be segregated, at least by definition, from the rest. But this is a false dichotomy.

The effort to divide up the autism spectrum has emerged mostly because some parents whose kids need a lot of support want to differentiate their child from autistic adults, whom they see as “not like their child.” Such parents believe that they are fighting a different battle than that of autistic adults who can, at times, pass as neurotypical; they see their kids as needing different kinds of support and different levels of restriction. But they are wrong on all counts. First, the fight for rights and supports for all autistic peoples is one fight—and indeed, a difficult one, given the many barriers to inclusion layered throughout our ableist society. Second, autistic people who seem very different from the outside may be more similar than we realize.

If there were really a need to divide the autism community between the parents and their kids who need high support and the autistic adults out in the professional world, we guess we’d be on opposite sides. Julia is the executive director of the Autistic Self Advocacy Network, while David is the father of an autistic boy with Down syndrome. Nico, David’s son, and Julia, have the kind of superficial differences that lead some to see a conflict where none exists—Julia gives speeches, and Nico is learning to use an Assistive Communication Device. Nico has an intellectual disability, and Julia does not. But in fact, in our years working on disability rights, we have seen that every policy goal and cultural shift around autism acceptance has been a rising tide that lifts all boats.

When self-advocates call for inclusive schools, ending restraint and seclusion, and alternatives to guardianship, they are taking on issues that are critical for people with the most significant disabilities in the United States.

Despite the work of so many self-advocates, parent advocates, and allies, the dominant message in our society is still that autism is horrible, and that autism, intellectual disability, and other significant cognitive disabilities mean that you aren’t really a person. People don’t have to believe these things consciously; they can just absorb the messages they hear all around them without realizing it.

When parents have absorbed these messages, maybe without even realizing it, that moment of diagnosis can lead to a very dark place.

If you believe that autistic people can’t be happy, or live good lives, or grow up and learn new skills—as the dominant message tells you—then when you, the parent of a child with high support needs, see an autistic person who can do things as an adult that an autistic child can’t, or who seems happy, or who has a good life, it can seem easy to think that they must not have “real” autism. After all, in this false message, “real” autism means suffering in our society.

Believing that autism equals suffering, so people who aren’t visibly suffering don’t have real autism, is a classic logical fallacy that becomes difficult to refute.

When parents like David say that their nonspeaking autistic child with an intellectual disability brings them joy, other parents have responded that we just don’t understand “real” autism. Meanwhile, the structural failures—the kinds of false scarcity that David wrote about in The Nation last year and that the Autistic Self Advocacy Network lobbies to change—that actually undermine quality of life for so many autistic people and our families, such as inadequate communication supports and lack of community services, go unaddressed.

Julia, for example, gave a speech in 2018 at the UN. People have used this to argue that she must have a fundamentally different, and much “milder” kind of autism. What those people don’t know is that on the day of the speech, the organizers had to rearrange the entire event schedule because she had a meltdown and couldn’t speak. They don’t know about the emergency measures she took to be able to read her speech after that; the support person behind her; how sick it made her after; or even that she wore glasses to read her speech because she damaged her eyes banging her head as a teenager.

David’s son, Nico, has the opposite problem. Because he doesn’t speak with his mouth, because he’s unlikely to be the executive director of a major nonprofit, because his needs are so overt, people easily overlook his layers of understanding and competence.

And sometimes, sadly, even adult self-advocates are too prone to distancing themselves from people with intellectual disabilities.

So what do we do now? First, we have to tell different stories, and lift up examples of people with significant disabilities who are happy, included, well-supported, and doing lots of different things.

We can presume competence—an important concept in the intellectual disability world that starts all interactions with the presumption that the other party is able to do things, able to communicate, able to be included. We can provide supports and accommodations for self-advocates, and we can normalize the idea of needing help—a lot of help—without sacrificing agency. We can be unwavering about the fact that autistic people and people with intellectual disabilities are full persons.

Ultimately, dividing up the autistic spectrum doesn’t help autistic people–but it does distract us from the urgent work necessary to ensure that all autistic people, especially autistic people with the highest needs, have everything they need to thrive. The people who benefit from this division seek to maintain the status quo, where resources are scarce and where higher needs justify segregation and coercive control. We think autistic people–[/i]all[/i] autistic people–deserve better than that.

This is a much needed article as it debunks the widely held notion that the ND movement is made up of a bunch of “high functioning” autistic people who are clueless about the needs of most autistics especially “profound” autistics. .

You do realise AS, that most of the autism-led groups are populated precisely by "high functioning autistic people who are literally clueless about the needs of most autistics" right.

I am not saying they don't care, but I don't think the ND movement are ever thinking of lower functioning folk when they talk about "autism rights", Plenty on this forum have already said this on WP so it's no secret.

I know this is an unpopular sentiment (and nobody on this forum wants to hear it) but for the 40% of autistic people who are unable to communicate for themselves to the outside world their only advocates are their parents.

The ND movement are currently (and will remain) a high functioning aspie organisation who'se members puport to speak for all autistics but they don't do they.

I have said this now for a decade that maybe the best thing is for Aspergers to remain usable label so that those who self-identify as apsies can lobby for their own and not try and speak for everyone on the spectrum.

40% is a lot of autistic people

But to me it strains credulity that the "high functioning" are less qualified than neurotypicals to offer advice about treating autistics and thus should be ignored.

I think what would work is high functioning folk offering to help NT parents with their children. Parents like myself are always willing to listen.

Aspies do have something to contribute toward helping parents of the 40% of autistic of people who rely on their parents. But ultimately the "shiny" aspies don't get speak for our children,

While not a completely false dichotomy the Autism Warrior moms vs advocates is considerably less than it was when I became aware in 2013. Antidotally I see a lot less of Autism Justice Warriors harassing and calling Autism parents Nazis. And many parents have moved beyond the "you do not have any right". In fact, there is a problem of overcorrection with parents saying thier kids are "special" or have "superpowers".

Trying to claim that millionaire actor Anthony Hopkins, or married celebs who live independently have the same needs as someone who is severely disabled and needs 24 /7 care.