Torn between being pro and anti-neurodiversity

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I haven't been here in a long time. In fact, it's been so long that I forgot my password and needed to reset it just to log in. The reason for this is that, for that time, I was growing opposed to, and even suspicious of, the whole Neurodiversity Movement or even the concept of Neurodiversity in general. I had come to firmly believe that, due to needing a medication to control the symptoms, autism in all forms was a disease and a disability. I suspected that the anti-cure sentiment held by the most radical wings of the ND Movement were connected to the pharmaceutical industry, and that Pharma was the only real beneficiary to autism remaining incurable. I wanted a cure for myself to go off the Prozac I was on and to please my neurotypical parents, with whom I still live at 35.

Several weeks ago, I ran out of my last prescription for Prozac and learned that the doctor I was now seeing after moving to a new town required an office visit to renew the prescription. Not being able to drive, and relying on my parents to take me to any appointment I had, I decided to just go off the medication and stand up to my mother, who had me put on it in the first place. I don't feel much different without the meds as I did with them, with the exception that I have more motivation to get up and do things and that I'm willing to give communities like this another chance. Still, my parents still say and do things that trigger "Autism Shame" and make me desire a cure. At the same time, I find myself somewhat cursing them as Ableists. My mother, at least, can't be an Ableist because she fought so hard for my school to meet my needs as a disabled student who was not only on the Spectrum, but also visually-impaired.

Hello. You have an inquiring mind. Although i would say that your suspicions about the pharmaceutical industry where it comes to autism are perhaps unwarranted, at least to the fact that autism and other neurological conditions not existing.

Autism Spectrum Disorder and the many conditions that fall under this umbrella term have been defined over many years by doctors, neurologists, psychiatrists and clinical psychologists.

In addition to their theories, specialist neurologists have also been studying the brain function or dysfunction using super sophisticated fMRI brain scanners, which are different to standard MRI scanners as they scan not only static scans of the brain but are able to monitor the way the brains neurological networks work over time, which they can then compare the results with scans made of people with normal or neural typical brains.

So. yep. there is now significant independent scientific research to back up the 80 years of doctors theories.

So, when it comes to neurological developmental disorders that is autism spectrum disorder and the subdisorders that fall under this umbrella term (such as aspergers syndrome etc), the nature of the disorder causes the brain to work differently to that of people with normal brains.

I compare the difference between the normal brains and the autistic brains to be similar to wiring in a sophisticated electronics device. In a standard electronics device the electrical wiring is designed and works to connect the various components of the circuit together so that the electronics device works as it is logically expected to.

Now, the autism spectrum disorder brain can be thought of similar to the electronics device but where
the device has different wiring, so that the device doesn't work as it is expected, in some cases the wiring
does not connect all the component parts, as expected, and so does not work in exactly the same way as the normal version.

Now, back to real life. Brains that have damage to their neurological networks can not be cured with medication,
however, in many cases some of the dysfunction that our neurological networks cause us, causes us mental health symptoms.

This is different to neurological normal brains, where the wiring is normal, as when people who are neurologically normal get mental health symptoms, the cause is usually thought to be caused by chemical imbalance.

So. When it comes to psychiatric treatments for autism spectrum disorder, doctors are not treating the symptoms of autism spectrum disorder with medication, but treating the symptoms of mental illness that is caused by autism spectrum disorder with medication.

As in essence, the medication can not cure damage to the neurological networks, but if the damage to the neurological networks causes chemical imbalance then the doctors can address this.

Now with regards to prozac and other antidepressants, i think that whether you take these or not is up to you.
However, you must be very careful, as antidepressants alter the levels of the chemicals in your brain and work over weeks rather than days.

When coming off antidepressants, you must be careful, as coming off antidepressants can cause significant with drawl symptoms and can in some cases put your own life at risk.

The with drawl symptoms may take a week or two for them to start, so coming off the antidepressants to start with may feel absolutely fine, for perhaps a day or two or even a week, but then you can suddenly crash, as if from nowhere.
And then you will suddenly feel really bad and in some cases possibly even suicidal.

So when coming off antidepressants it is always recommended to come off them extremely slowly and ideally with the supervision of a doctor. Doctors can prescribe you lower dose versions of the antidepressant that you are on, to help you come off them.

So you can reduce the dose, wait for a few days or even a week or so, see how you feel. if ok. stay on that lower dose for a week or so, and then reduce the dose again.

In some cases it is possible to go for a complete cut with drawl, in some cases this is required if a person is going from one antidepressant so as to take a different one that has side effects if both antidepressants are used together.

However, i have gone through that process before and its not a particularly fun experience. You can feel really mixed up, emotionally unstable, get brain zaps which are like being hit by lightening, and generally feel extremely rough.

It is probably recommended that if going through this style of with drawl that you get put in hospital for a short period, so they can monitor you during the process.

Anyway. with regards to pharmaceutical companies. Yes, i can understand your suspicions, However i do not think they necessarily invent health problems, i think they are more interested in capitalising out of the illnesses in order to make money from their particular medication, and it is well known that the companies push their medication to doctors by giving the doctors financial incentives to push their medications.

My main gripe with such companies is that i feel they have undermined the use of benzo's in the treatment of anxiety.
I think that benzos are much more effective in treating short term anxiety, such as found in anxiety attacks and meltdowns and are not dangerous if used a few times a month.

But because antidepressants are a daily consumerable and are not as cheap as benzo's (which are not protected by copyright), then the companies are undermining the use of benzo's so as to push their less effective antidepressants.

Which means that people aren't given the relief form the anxiety that they suffer, because giving patients benzo's does not make any money for any of the big companies.

This i think is ignorant. but hey people are corrupt and greedy, including doctors.
But that is my main gripe really.

Anyway. hope my advice helps.With regards to your mum, she may be just doing what she thinks is best for you.
As i am sure she has your best interests at heart.

It's okay to not have a "Side", personally I'm very pro ND, I can't picture me being me at all without me being autistic. Autism is hard, and disabling, but that doesn't make it bad. But you don't have to choose to be pro or anti ND, it's okay to live in a gray area, or not even know for sure.

I feel enabled (positively) by people who embrace differences. I feel disabled by people who do not. Those people can be NT or ASD or whatever. At 40-some, I want to find a way to behave more in a way that makes *me* comfortable, with pride.

I haven't used meds for 9 yrs, but am considering that I would like to be less "jumpy" - meditation and/or medication. ASD has pluses and minuses and it's tricky to identify what is a minus that would benefit from an assist, just as it can be tricky to identify how to best apply a plus.

Good luck with ditching the meds. I find I have a more real life experience when not on meds and after being on them for more than a decade from 95-2006 it's been an overall positive. People may not like me as much unmedicated as the meds do aid in helping one fit in with the cookie-cutter society that is so prevalent but I have a healthy rebellious nature which keeps me pretty strong when swimming against the stream. I feel very lucky to have that rebellious streak which I'm comfortable in. Without it I can see how crippling things could be.

As a new person on this forum it is an interesting community. I was surprised to learn of people being comfortable assembling in groups to push an agenda since that sort of thing is so uncomfortable for me but I guess it's all part of learning how diverse those on the spectrum can even be. I find the pharmaceutical industry is far more interested in selling units that providing help so I'm with you on the skepticism for sure.

Prozac is not a treatment for autism per se, though it can be a treatment for the depression, anxiety, irritability, and grudge-holding that often accompany autism. At one point there were studies of the idea of using Prozac to treat autism per se (my boyfriend participated in one of those studies), but it was concluded that Prozac doesn't do that.


If there were a cure for autism, it would likely take the form of a variety of extremely expensive, highly customized biochemical treatments, because there are so many different kinds of autism with different combinations of genetic and in-the-womb environmental causes. And in most cases it would probably involve a long series of treatments, not a one-shot deal. So, that would likely be a very big business for Big Pharma too -- involving much more money than the drug companies might lose from a resulting reduction in the market for anti-depressants like Prozac, the market for which consists mostly of non-autistic depressed people.

So, no, the pharmaceutical companies have no incentive whatsover to be the masterminds of the neurodiversity movement.

Neurodiversity activists are just autistic and other neurodivergent people who want to be treated like human beings. We want our strengths and talents to be appreciated, and we want our weaknesses to be accommodated so we can do productive work.

Regarding the birth of the neurodiversity movement, see History of Autism Network International by Jim Sinclair, and see also Don't Mourn for Us, also by Jim Sinclair.


That's great, but, as another person in this thread warned, you are likely to start experiencing withdrawal symptoms soon.

With Prozac in particular, the withdrawal symptoms might not make you feel too bad, but they might, for example, cause you to become much more irritable and/or grudge-holding, and/or they might cause you to behave in much more obnoxious and/or aggressive ways, possibly even to the point where your parents might feel that they have no choice but to throw you out of the house. Prozac withdrawal might also impel you to use illicit drugs and get hooked on those.

So I would suggest that you allow your mother to drive you to the psychiatrist's office and then discuss with the psychiatrist how you can safely lower your dosage over time.

You have good reason to be suspicious of the ND movement.

Firstly many of the extremists in the ND movement want all autism research that may help many lead an independent life banned.

Research that helped many with ADHD lead a normal life through new drugs.

Secondly such a thing would lead to the herding of those with autism into a genetic underclass. They would then be ignored, segregated and thrown a worthless platitude once in a while.

We would be better off campaigning for more rights and opportunities within the wider disability realm.

Many of us not wanting a cure or prenatal genetic research, isn't the same thing as not wanting more assistive research. We do, that's the whole issue. If most of the research is going towards getting rid of us, it's not going towards helping us.

"Many of us not wanting a cure or prenatal genetic research"

I respect the view of those against abortion however just wanting "assistive research" is not normally how ND extremists commonly word their views.

I feel ND started out with honourable intentions which later got twisted by the 5% minority to suit them.

Many complain of them bullying people into a particular point of view and a cult mentality of wanting to keep people in and down rather than improve their personal circumstances.

At the end of the day its about personal choice whether i want to change sex , nationality or desire a cure for my medical condition, no one / group has the right to dictate against what may be best for me.

If you can conveniently do so, could you please point to a specific example of the "ND extremists" you are talking about?

I get the impression you are responding to a straw man rather than to the actual position of most neurodiversity / autistic rights activists.

Most neurodiversity / autistic rights activist blogs that I've seen advocate a mix of (1) accommodations and (2) research into non-traumatic treatments for the most disabling aspects of autism and/or co-occurring conditions, while rejecting the idea of a total "cure."

A big problem with the idea of a total "cure" is that it would necessarily involve a radical re-wiring of the person's brain, thereby radically changing who the person fundamentally is and quite likely destroying the person's strengths as well as the person's autism-related weaknesses.

Another big problem with the idea of a total "cure" is that "autism" is not just one condition, but actually hundreds, maybe even thousands, of different conditions, apparently caused by a wide variety of different possible combinations of genetic anomalies and goings-on in the mother's womb. So there couldn't possibly be just one "cure"; there would have to be thousands of different, highly customized cures, each soaking up huge amounts of money -- of which there isn't an infinite amount, so that means money NOT spent on other kinds of research that might be a lot less costly yet very beneficial to more people.

There are also other problems with the idea of a "cure" which I will go into later.

Also neurodiversity / autistic rights activists commonly oppose ABA, at least in its classic form.

More thoughts about the idea of a "cure":

Some people seem to think that the only reason to oppose sinking tons of money into the search for a total "cure" for autism would be the idea that all autistic people are savants with superpowers. And indeed the potential loss of genius is a valid concern for some of us.

But there are other, more disability-oriented reasons to be wary of the goal of a "cure." The disability rights movement, in general, has long been wary of the idea of sinking money into "cures" for various innate disabilities, for which the disability rights movement advocates accommodations rather than cures.

Why?

Consider deafness, for example. Now, if someone were born with normal hearing but then became deaf due to illness or injury, then restoring that person's hearing would clearly be an unalloyed good. On the other hand, if someone were born deaf and then suddenly given the ability to hear, that could likely be, at best, a very mixed blessing. Because the person's brain would have developed without hearing, the person would likely have extreme difficulty integrating the new sensory input, and hence would likely be overwhelmed and driven crazy by it.

See also my post here in the thread titled Case against ND movement’s brain wiring argument.

Ive mentioned previously on another post i dont believe there will be a total cure soon.

What there may be potentially however in the near future is treatment / drugs that help an autistic individual function more independently.

There are hardly any cures for any mental medical disorders schizophrenia, bi polar, depression anxiety to name a few, but there are treatments to help those with all of those live a reletively independent life.

For autism there is hardly anything at all as yet!

However recent strides in science has scored some tiny victories lately - suramin trial, some stem cell research, balovaptan, gene editing in mice models and finally stomach bacteria Faecal transplants being the most sucessful.

Im not pretending any of these are a "cure" or even effective treatment yet, however improvement in symptoms is improvement in symptoms so the take away is - it does prove that autism may not be the immovable object its often portrayed as by many on the ND side.

Now in order to have the potential for "treatments" science needs the optimal outcome objective of cure even if cure is unlikely.

To use an example to fly to mars which is potentially possible in the not too distant future, you need to aim for the stars even if the stars are impossible for now.

My objection to ND is it tries to use identity politics to as a way of making it eventually difficult for science to create treatments for autism by making it "offensive" to the "group" for science to invent things that change the group. In the same way as a gay cure would be offensive to LGBT.

For myself, not only having ASD but also several mental health issues and neurological sleep disorders, My ASD is the one condition i wouldnt want to be taken from me.
Then i think of my son, 7 years old with ASD. If someone told me there was a cure for his ASD i would probably asault them, as while he has had difficulties, he is far too good for this world. He has a passion, an honesty, a curiosity and an outright innocence that i have never seen before in my life. I am truly blessed to have my son as he is!
However, my partner also works with children in residential care with more severe ASD and the behavioural issues that come with it. The children from all accounts are amazing and inspiring, but my partner does find it distressing to see them suffer with their own ability to process their world.
I can understand some peoples desire to reduce the distress that can be caused due to ASD in more severe cases.

That. That.

Yes, and if only some significant part of the research would focus on that!! ! Alas, it doesn't.

An effective "treatment" for me would have involved teaching real life skills much sooner than I learned them. I do wish I understood things as normal people do, especially the social rules that may lead someday to advancement on the job and someday finding a loving man who understands me and loves me, even though I'm different. I would have developed more like a normal person and my differences would have been seen as just "quirks," not as permanent barriers I can never now hope to surmount.