"Autism" definition wars thread

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Thank you Mona for introducing me to this thread, here's my input, and do with it what you may!

What great conversations in these threads, and very strong opinions! It's to be expected that there's such unrest about the definitions in the DSM and the categories and generalization of the autism diagnosis. My research (that is being written now, and hopefully will be published soon) focuses on a critical period of development of what we on the science side of things call "autistic phenotypes"which is a fancy way of saying common behavioral deviations that cause undue stress on the individual and we see universally in autism, and are used to diagnose. For autism those phenotypes are

1)Repetitive and restrictive behavior (think pacing or rocking, in mice we see it as over-grooming). Also included in here is focused attention on specific subjects
2)Social communication difficulties (inability to read cues, or interact smoothly* this is the one my personal research focused on, so I understand the neuro part of it a bit better)

I'm sure everyone on here is very aware that we do not have one genetic cause of autism. Autism can be caused by thousands of genetic mutations, but also environmental factors and even parental neglect in severe cases such as the Romanian orphanages where children had social deprivation. The environmental factors spurred me to look for a critical period of development to help determine during which ages a child is solidifying the circuits. What we don't know is why all of these genetic mutations end up having similar results (phenotypes). This is why autism is very difficult to treat. I'd like to also point out that there's a lot of discussion that autism isn't actually and shouldn't be considered a disorder. It's also a theory that it's a evolutionary adaption, that has persisted for some unknown reason. I'm not here to make concrete statements, just all things to think about, and this is why I love research and science.

When it becomes diagnostically a disorder is when it effects the "daily activities" of an individual and makes every day activities more difficult. At that point we consider it a disorder (as with any mental illness or behavioral coping mechanism).

What we do know, is that people that are diagnosed with autism show neurological similarities when processing. I'll try to be very clinical, because I know that this is personal to a lot of people. When someone is processing social information, it goes through a pathway in the brain, and is first filtered through the cerebellum (where my focus of research was on, think "Air Traffic Control" it mediates input signals and amplifies or subdues signals to give the brain the proper response to stimuli) then it's filtered through the hippocampus (memory- is this situation like other situations I've encountered? Also involved with emotions and limbic system), and ultimately through the prefrontal cortex (the filter of the brain, "should I say this?"). When we drink alcohol, we shut down the connection between the rest of the brain and the prefrontal cortex which leads us to say things we wouldn't normally have said out loud, and to make judgement calls that maybe aren't very good. ADHD is a type of autism (this is another huge debate with researchers, should it be?) that actually is mostly about the prefrontal cortex connection. Because people that have ADHD have less of a connection (or less signalling, we don't know which yet), they tend to not be able to concentrate on one thing, because impulse control and judgement are harder.

Okay back to ASD, people with ASD regardless of the genetic mutation, or the environmental influence- show very similar neurological results. Basically the signalling in the cerebellum is getting incorrectly amplified or depressed. Now I'm not saying HOW much it's being amplified or depressed, that is 100% unique to the individual. Some people it's only slightly different, some people it's wildly different (ergo the variation in symptoms).

Here's an example. I'm someone with ASD, and I'm meeting someone new. That person says "hi, nice to meet you-I like your shirt". Processing that thought, through my cerebellum, the air traffic control tells my hippocampus "THIS IS A THREAT" my limbic system then goes "A THREAT! PROBABLY BECAUSE YOUR SHIRT IS UGLY" and it gets processed through your prefrontal which has less of a signal so you know you should say "Thank you, nice to meet you too" - but instead you end up saying something else, and end up feeling awkward and unable to interact properly. Now this is brash example- but you can see how the mediation of signaling can be much different in autism. Some non-verbal ASD people may have a huge signal depression, some kids may have a huge VOLUME UP on their signalling. It also varies where the signalling changes occur. Some happen (like ADHD) in connection to the prefrontal cortex. Some happen much earlier (making results more extreme).

Anyways, research doesn't have one pathway effected, and as of yet we can't uniformly turn up or down signalling and not effect the rest of the brain. But research is trying. I think, especially coming from a NT (yet, all ASD researchers believe everyone is basically on this spectrum), that whatever identity feels right for you, is right. Yes, you are clinically diagnosed with something, and that's important for insurance and for getting help, and being able to communicate broadly with doctors and friends and family- but know that the DSM is even behind modern research (they only update it so often). How you feel, and what feels like your truth is so much more important.

Thank you for including me in this discussion, and let me know if how I explained it is not your truth-I learn through modification, and this is how I know how to explain it as of now- I try to connect what I know doing neurodevelopemental research and clinical experience with patients all over the spectrum. I'm also dating someone with Asperger's (how I was introduced to this site).

Best,
C

Would you call an office worker repeatedly passed over for promotion due to his/her poor communication skills someone who has a disorder ?

@loveandotherdrugs,
Thank you for that comprehensive summary. I am autistic and I also suffered a cerebellar stroke in 2015. I did quite a bit of research about the function of the cerebellum and its role in autism, while I was recovering (one year of PT / OT / Speech / Social Work and Vestibular Rehab). I suppose I have a double whammy being born ASD and having cerebellar damage as well.

Thanks again for posting!

Isabella, thank you so much for your reply!

May I ask if the vestibular rehab was electrotherapy? They are finding currently (in Canada, and DC) that small electrodes placed around the cerebellum and small (unnoticeable to the patient) impulses every so often helps the functioning. It's preliminary and the research is only being done on high functioning adults that can consent (for obvious reasons) but the research has been incredibly positive. My focus was kids, and specifically with a genetic mutation called TSC1 which creates tumors all over the body, but largely effects the cerebellum.

For the longest time the cerebellum was only considered to be in control of skeletal muscle movement. Even in today's medical schools they still teach that the cerebellum is responsible for coordinated movement. I'm sure that you've read that all over the internet, and it definitely does control some muscle movement. It's really an amazing part of the brain since the cerebellum is only about 10% of the brain's weight and contains more than half of the brains neurons, obviously there's something more there. There's a lot of evolutionary theories that it was actually our first brain as homosapiens, and the rest grew from that which is why we call it the "little brain" or the "primal brain" It's a relatively new way of thinking that it is considered to be the "Air Traffic Control" of the brain, but it communicates directly to all parts of the brain and is directly involved in mediating signaling and all research is updating accordingly. Medicine is an ever changing profession!

Yes, a double whammy- but unique! Some of my favorite people in this world are on the spectrum- and I love how different everyone is. Thank you for sharing!

@Firemonkey:

So no, under that definition you wouldn't have a disorder. It's only considered a disorder if it effects your every day life and functioning. It is completely different if you go to a psychiatrist or primary doctor and say "It is extremely difficult to communicate effectively, it makes me anxious and I don't understand" The clinician will then try to determine how much this behavioral deficit (again, clinical terms-maybe not the accurate way of saying it) is effecting your day to day activities. Based on that, they will give you a diagnosis.

That diagnosis is patient based, and has nothing to do with how others feel around you. To be honest people can just be jerks and as clinicians they try to separate how these difficulties effect you personally.

I have worked closely with doctors that have talked about the difficulties with autism diagnosis. Families and individuals need help with symptoms and treatment, and without an official diagnosis, some don't get any financial help or resources. Clinicians have a tendency of taking that into account and trying to deduce the need, and sometimes factoring that in when making a diagnosis.

Hi loveandotherdrugs,

My VRT wasn't electrotherapy. I don't remember all the terminology but I had to wear virtual blackout goggles while my head was twisted around in the dark to check my balance (lol, clearly not scientific vocabulary). It was terrifying to be honest because I had no sense of direction. This was done to rule out inner ear problems as the cause of my vertigo, dizziness and double vision from Nystigmus / Ptosis. The goggles experiment was a waste of time because, obviously, my vertigo was from cerebellar stroke damage and had nothing to do with my inner ear.

The therapy itself was quite old-school and primarily focused on my vision. It was done in conjunction with my Physical Therapy so I'm having trouble remembering which was which. I had to wear opaque sunglasses with a little prick hole to look through, so that my pupil would focus instead of turning to the side. There was a lot of standing on one foot and reaching for things with one eye shut, etc. I had an obstacle course for balance. They used a vibrating tool on my feet to improve my sensation or neurological pathways.

Occupational Therapy was really helpful because it taught me to use my left hand again by picking up small items and dealing a deck of cards, or other fine motor skills.

I can definitely vouch that even as an autistic person (Level 2), my cerebellar stroke brought emotional and regulatory disturbances that even the doctors didn't expect. Many of the doctors continued to assert that the cerebellum was related to balance and gross motor control, without recognising or acknowledging the myriad of executive functions which would be affected. The changes to my personality are profound in subtle ways. I lost my ability to mask my autism and to camouflage my emotions or fine-tune my thinking. I'm still reading about the role of the cerebellum and I'm amazed how complex it is, compared to what we learn in school.

My stroke was at the vermis (the connection of the left and right hemispheres) and it was caused by an embolism.

Thanks again for posting!

@loveandotherdrugs Would you say a person is disordered if they are very intelligent , but need quite a lot of support to maintain their independence due to executive functioning difficulties and poor practical intelligence ?

Here, in the thread Can't Relate To My Peers:

It’s a long time since I read Kanner’s paper on this, but the impression I got was that he recognised his subjects as autistic, and derived the autism label from this. If you want to study that understanding, of autistic as one of those aspects of the psych that determine personalities, you will find it in Aaron Rosanoff’s 1921 paper “a Theory of Personality...” which lead to the 1935 paper, Humm and Wadsworth’s Temperament Scale (where the label has now been changed to artist) from which were developed Chandler & Macleod’s Temperament and Aptitude psychometric test, which in 1981 found me to be very strongly autistic, and from which was derived a very effective on line test, which, sadly, is no longer available.

You should also note that certain frequent posters are repeatedly ramming Bleuler at us, though his use of the label had nothing to do with being autistic as a genotype. Those same posters know about Rosanoff etc. (I've told them often enough) but they never mention them. You should think about that!