Journalist query: Studies of "subtypes" of autism

[Michael Marshall]

Hi folks,

My name is Michael Marshall and I am a freelance science journalist.

I am writing a feature article for New Scientist about research studies that attempt to identify consistent subtypes of autism. I should say at the outset that the researchers are not trying to revive outdated concepts like Asperger's or high- vs low-functioning autism. Instead the researchers are looking for traits that tend to co-occur in lots of people, and trying to trace these back down through changes in brain wiring, all the way down to genetic variants. They describe their work as trying to understand the biological roots of autism, especially why autism can be so variable.

One of the studies was discussed on the forum here: Four clinically and biologically distinct subtypes of autism identified in major study

I'm keen to interview an autistic person, to get a sense of how this research might affect autistic people. Might it be beneficial, e.g. more personalised guidance and accommodations? Might it be harmful, e.g. stigmatisation? Might it make no difference at all?

If anyone is interested in taking part, please reply and we can take it from there.

Please have a look at my portfolio authory.com/MichaelMarshall and website michaelcmarshall.com to get a sense of my work.

Many thanks,

Michael

 

[Crossbreed]

There are three major paradigms about the spectrum:

1. that the whole spectrum is an expression of defect,
2. that the whole spectrum is a healthy expression of neurodiversity,* and
3. that ASD1 is a healthy form of neurodiversity with ASD2/3 including varied subsequent injuries.

For the rationale behind #3, see Autism Subtypes...

*Other examples of neurodiversity include intellectual giftedness & sinistralism.

 

[Neonatal RRT]

Hi folks,

My name is Michael Marshall and I am a freelance science journalist.

I am writing a feature article for New Scientist about research studies that attempt to identify consistent subtypes of autism.

I'm keen to interview an autistic person, to get a sense of how this research might affect autistic people. Might it be beneficial, e.g. more personalised guidance and accommodations?

For some background, I am an Asperger's/ASD-1 variant. I have worked at one of the largest children's hospitals in the US for nearly 40 years... and we do have autistic children coming into the hospital for various reasons... some of them rather "profound" cases... and we do have staff (physicians, therapists, nurses, etc.) that are also on the autism spectrum. This is one example of the rather broad presentation and manifestations of autism.

Obviously, healthcare is best when it is individualized. Many healthcare systems have generalized approaches to give us some guidance... but we all agree that personalization is best. However, the reality is that when governments and health insurance companies are involved, it is rarely individualized... and if an individual does not "fit" within a specific, pre-determined category within their system, people can be denied the care that they need.

I would also add that the symptoms of autism will often manifest themselves differently as a person matures... and as such, even our pediatricians who deal with autistic children will not recognize autism in their adult co-workers.

The first hoop to jump through with all of this is education... as the vast majority of people who have heard the term "autism" might have little understanding of what that term means, or perhaps have some "stereotypical" imaginative, stylized, misrepresentative visions based upon TV and movies. Even healthcare workers need education in recognizing and then learning how to communicate and socialize with individuals with an autism condition.

Before we start talking about personalization of care, government assistance, insurance approvals, and what that means... there needs to be an education campaign.

Might it be harmful, e.g. stigmatisation? Might it make no difference at all?

To be honest, the very word "autism" comes from the Greek root word "auto" or "self". It translates in many languages to something like "One who walks alone." We may not like to walk alone... in fact, many are quite distressed about the whole situation... but the reality is that we have been marginalized and stigmatized our entire life. For those that can work... we are constantly being passed over for advancement... even when we outperform our peers. The social and communication issues, the sensory issues, the neurodivergent thinking, and for those that have significantly higher intellects, it adds further to the isolation... all of it is different than so-called "neurotypicals". We cannot relate to neurotypicals and vice-versa. A complete disconnect. A glass wall between us. We have been misunderstood, falsely accused, false "moral diagnosis" have been put upon us, left out, isolated, even traumatized by people who we should have been able to trust. We have 6X the rate of suicide than the general population.

Even when we do have opportunities for "therapy" it is primarily focused upon learning how to behave like neurotypicals... so we can "fit in" and "function" within society. We are taught or self-taught to "mask" or hide who we are. Imagine a world that basically tells you, "You are not welcome or acceptable as you are... you must change who you are... or else." Imagine what that might do to your psyche.

So, at this point, I am not sure it could get much worse. Change is needed.

The study you were referring to out of Princeton University: Major autism study uncovers biologically distinct subtypes, paving the way for precision diagnosis and care

 

[velociraptor]

outdated concepts like Asperger's

Not all of us agree this is outdated. It fit me better than ASD1 ever has. [spits]

 

[gigi1919]

More science, more divisions. Subtypes and labels. Treating people like categories and some weird specimen. Everyone wants to make their own mark on autism and crack the code. Not an accusation. Just my entitled perspective .
A person who is not autistic will never "crack the code". Only the autistic can. Or maybe there is "no code". Just living beings.

History shows that any similar categorisation, especially related to genotype association has led to nothing good. The perpetual perspective, looking at us as "the other" leads to using any genetic data - even those unsubstantiated to abuse as there is inevitably determinism and reductionism at work: "If only we categorise the people, we can dissect the genes, we can change the gens, we can eliminate the flaw"

Ps. although autistic ,I don't even like being locked in this label or adhd, or any other. I prefer to be just accepted as I am, not measured or evaluated, or boxed in. Maybe that's one of the categories...?

 

[Outdated]

I am writing a feature article for New Scientist about research studies that attempt to identify consistent subtypes of autism.

Hi Michael,

I recently submitted genetic material for a study being carried out in Adelaide that has similar aims but is looking at the broader spectrum of neurodivergence rather than just autism, the researcher for this project (also a Brit) is more interested in schizophrenia than autism but he says the two conditions share many of the same genetic markers.

The study will take 5 years with genetic samples being submitted again every 6 months to look for variations in genetic makeup over time. You can get more information from the man himself: [email protected]

My own thought is that autism is just autism and it's the comorbities, the other conditions that people have along side their autism, that make such a difference. I'm one of the rare ones with no comorbities, I'm just pure ASD2. The hard part for everyone to try and quantify which is which.

What part is just autism?
What part is because of another added condition such as Attention Deficit or Bipolar?
What part is the psychological result of life experiences - PTSD etc?

So I don't believe there's "different types" of autism but that people can often have more than one condition simultaneously.

Cheers,
Andrew.

 

[Crossbreed]

More science, more divisions. Subtypes and labels. Treating people like categories and some weird specimen.

Such objectification is necessary to deal with the overwhelming epidemic of grievous co-morbid conditions clinically.

S/he who has the most accurate model wins...!

 

[velociraptor]

S/he who has the most accurate model wins...!

Most of the labels I've had stuck on me over the years have not made that much difference. It has always fallen to me to be the one to make the needed changes in my life because help is either unavailable, indifferent, or overwhelmed.

 

[Neonatal RRT]

Labels and categories: Just for a frame of reference... in the US, there are over 150 different ICD-10 codes for adult pulmonary hypertension. My wife, a RN, ran an adult pulmonary hypertension clinic for over 10 years. So... here is an example of what insurance companies can do with regards to categorizing a specific diagnosis... and individualizing care... but haven't done with autism. As I suggest, the entire system needs some education.