Being autistic, adhd and random stuff

[stickygirl]

Just curious, when all is said and done. Just what has anyone physically done to help/change
Autism or any other brain related abnormalities?

Autism can be regarded as a naturally occurring variations to the genome. The only changes that can be made are in the form of accommodations and tolerance in society. If the individual is significantly affected they they made need lifetime support. There are no medical/physical treatments for autism in the same way there are no treatments available for left handed people.
Autism is often comorbid with other inherited characteristics such as ADHD, epilepsy, gastro problems, anxiety ( no shit ), sleep disorders. Latest thinking does not isolate conditions to just the brain: as a genetic characteristic it is present throughout the body.

I hear and read lots of bs from people that claim they have autism. yet I wonder if they even met someone with it?

Why does it matter to you? Unless you have appropriate qualifications and are used to assessing autism, you're going to have to accept what they say at face value. If you don't agree with them, or find the topic irritating then avoid.
Hope this helps, but I'm no expert.

 

[Strixaluco]

Just curious, when all is said and done. Just what has anyone physically done to help/change
Autism or any other brain related abnormalities?

What do you even mean by changing it? Or physically helping it? We're talking about genetic differences here after all. Not something you can physically alter even if autism is in the body very much physically. You can't change someone's brain.

I hear and read lots of bs from people that claim they have autism. yet I wonder if they even met someone with it?

EVERYONE has, in most cases unknowingly. 2/3 of autistic people are not like the stereotype of autism. For example my niece, officially diagnosed in primary school, is nothing like the stereotype - but a helluva lot like other actually autistic people I know. Yes, I know many and have met plenty. In person and even more online. I don't even know how many my family has because older generations were and still are seriously underdiagnosed.

The most bullshit comes from people who don't actually know much about autism at all. Which applies even to many healthcare professionals, who might not even know that an autistic person may have learned to tolerate or fake eye contact, and you can't screen someone as not autistic just because you register eye contact.

 

[anthrodisiac]

What do you even mean by changing it? Or physically helping it? We're talking about genetic differences here after all. Not something you can physically alter even if autism is in the body very much physically. You can't change someone's brain.


EVERYONE has, in most cases unknowingly. 2/3 of autistic people are not like the stereotype of autism. For example my niece, officially diagnosed in primary school, is nothing like the stereotype - but a helluva lot like other actually autistic people I know. Yes, I know many and have met plenty. In person and even more online. I don't even know how many my family has because older generations were and still are seriously underdiagnosed.

The most bullshit comes from people who don't actually know much about autism at all. Which applies even to many healthcare professionals, who might not even know that an autistic person may have learned to tolerate or fake eye contact, and you can't screen someone as not autistic just because you register eye contact.

Case in point, I've gotten so good at masking that I've had therapists tell me that I wasn't on the spectrum. Then I dropped the mask and they quickly realized I was very, very correctly diagnosed. It's not an uncommon phenomena, it's an adaptive survival mechanism, especially in middle and high school, because being noticeably autistic is like the equivalent of tossing chum in a bay full of sharks and jumping in to go pet them. You get torn apart, so you either retreat and isolate or you adapt.

Even people who know people on the spectrum don't have a good idea of what it's completely like because, wait for it... It's a spectrum. Nobody's autism is exactly the same, everyone has their own mix and match grab bag of symptoms. There's no perfect autism-dar, where you can just look at someone and know yes/no. It's irksome when people accuse others of faking autism without knowing the person extensively, because a lot of autistic adults who are high-functioning have gotten at least somewhat good at masking and presenting like an NT.

 

[PMarky2]

An awful lot of autistic folks hide in plain sight. I managed to go 53 years without anyone realizing that I was Autistic, and then it took me another three to get diagnosed as having both ASD and ADHD. Why? I am pretty successful at masking; my ADHD is the variety without hyperactivity - which is what they might have picked up on at school in the 1980s; my occupation is one that does not expose my vulnerabilities that often and allows me to set my own schedule to quite a ridiculous degree.

For me, the comorbidities are actually more trouble that the actual Autism, as it is the sleep disturbances, migraines, anxiety, and stomach issues that are the usual cause of my impaired function, rather than the actual autism. The autism makes me a pretty good researcher, and it also allows me to assemble material efficiently because the heighten ability to see patterns in the information. Both of these skills are useful for an academic.

The one things that does give me away is my special interests - they do tend to get pretty obsessive at times. Again - no bad thing in my line of work - at least when work and special interests coincide

 

[stickygirl]

The problem with the word spectrum, I suspect, is that people picture the science diagrams of EM radiation: a two dimensional colour bar running from gamma rays through visible light and then infrared.

Playground survival when your trans and ASD turns you into a consummate actor. Decompressing at home meant changing into my proper clothes, but what I couldn't know was that it also served to empty my masking bucket. Understanding why I am the way I am has given me so much peace. I am empowered by my diagnosis.

 

[Strixaluco]

Even people who know people on the spectrum don't have a good idea of what it's completely like because, wait for it... It's a spectrum.

This, too. At worst even they may even have just the too narrow view that basically consists of at most 30% of the autistic boys and not even 10% of autistic girls. Basically those who struggle the most.

But fellow autistic people (if they know they are autistic) often have much better radar.

 

[stickygirl]

I'm going to be cured of Autism !!!

Ever heard of Uta Frith? Nor me. She's a professor and a Dame who no longer thinks autism is a spectrum. The suggestion is likely to save the UK Govt £££. Under her criteria I will no longer suffer from autism and anything I do with be purely attention seeking.

I think she ought to chummy up with Dr Hilary Cass, the doctor with no previous experience of trans health, commissioned by the government to save £££ and who concluded transgender people don't exist - they're mistaken. Funnily enough her work saw her made into a Dame as well! Yeay!

As the song goes "there is nothing like a Dame" (of the corrupt British Empire). Hooray for nepotism!

 

[PMarky2]

This, too. At worst even they may even have just the too narrow view that basically consists of at most 30% of the autistic boys and not even 10% of autistic girls. Basically those who struggle the most.

But fellow autistic people (if they know they are autistic) often have much better radar.

What set me off thinking I was ASD was the fact that so many of my friends have either ASD, or have strong traits but don't quite meet the usual diagnostic criteria. In short, I tend to attract auties, so I wondered whether I was in the club too.

The doc who tested me said 'definitely neurodiverse' the rest is somewhat up for grabs but best guess is inattentive ADHD with a good dose of ASD.

I wonder whether the two Dames you refer to are batting on their home pitches when they are so flip about Autism and Transgender issues. I know from the inside that academics off their own patch are notorious for misleading themselves, and sadly, others.

 

[stickygirl]

One sound bite from the autism opinion piece was that everyone is neurodivergent thus overturning diagnostic criteria in dsm5 I suspect.
Everyone has an opinion about autism these days but opinions are two a penny

 

[Sounding22]

Autism can be regarded as a naturally occurring variations to the genome. The only changes that can be made are in the form of accommodations and tolerance in society. If the individual is significantly affected they they made need lifetime support. There are no medical/physical treatments for autism in the same way there are no treatments available for left handed people.
Autism is often comorbid with other inherited characteristics such as ADHD, epilepsy, gastro problems, anxiety ( no shit ), sleep disorders. Latest thinking does not isolate conditions to just the brain: as a genetic characteristic it is present throughout the body.

Why does it matter to you? Unless you have appropriate qualifications and are used to assessing autism, you're going to have to accept what they say at face value. If you don't agree with them, or find the topic irritating then avoid.
Hope this helps, but I'm no expert.

I was born with Epilepsy and there is characteristics with it such as seizures from tonic clonic (gran mal)- (petit mal) and many other types.
Epileptic activity can be found via EEG and in certain cases controlled via medication and or surgery.
An uncontrolled involuntary muscle movement is Epilepsy, although not necessarily like those diagnosed.
Most likely most people will experience an involuntary movement sometime in life without it being Epilepsy.
It is this type of event you speak of.
I also have tremendous memory loss (short term) but amazing (long term) as in years. This is no help at all.
Thanks for your thought. BTW the medical field does the best they can do but they have a ways to go.
When I first had issues, they called them dizzy spells not to mention electro shock was used

 

[Sounding22]

What do you even mean by changing it? Or physically helping it? We're talking about genetic differences here after all. Not something you can physically alter even if autism is in the body very much physically. You can't change someone's brain.


EVERYONE has, in most cases unknowingly. 2/3 of autistic people are not like the stereotype of autism. For example my niece, officially diagnosed in primary school, is nothing like the stereotype - but a helluva lot like other actually autistic people I know. Yes, I know many and have met plenty. In person and even more online. I don't even know how many my family has because older generations were and still are seriously underdiagnosed.

The most bullshit comes from people who don't actually know much about autism at all. Which applies even to many healthcare professionals, who might not even know that an autistic person may have learned to tolerate or fake eye contact, and you can't screen someone as not autistic just because you register eye contact.

Sure surgery. A friends son had Autism. When I went for cancer treatments my driver told me he had a cancerous tumor on the brain and surgery saved his life. Technology has come very far but still has far to go true but we are no longer in the dark ages. Until you or a loved one is hit with an illness you don’t have much room to talk.

 

[stickygirl]

Sure surgery. A friends son had Autism. When I went for cancer treatments my driver told me he had a cancerous tumor on the brain and surgery saved his life.

Autism is a genetically inherited disorder than cannot be cured by surgery or any other medical intervention, hence your friend's son is still autistic.

Cancer can indeed be treated. I hope yours was successful.

 

[Strixaluco]

Sure surgery. A friends son had Autism. When I went for cancer treatments my driver told me he had a cancerous tumor on the brain and surgery saved his life. Technology has come very far but still has far to go true but we are no longer in the dark ages. Until you or a loved one is hit with an illness you don’t have much room to talk.

You clearly haven't read the discussion properly. There's no "until" for me, I'm way past that point. You are, in fact, very insulting in your dismissive comments.

There's no surgery that makes an autistic person non-autistic, it is not like cancer. Brain injuries may make people neurodivergent in their own way though (usually leaning towards adhd traits) - my late husband was one example. But no surgery could have removed that because it's not just in limited areas. (oh and he later died of cancer... A metastasis in the brain.)

And indeed autism is all around the nervous system on a genetic level and that is not something you can just operate away. You'd need to change the whole brain AND genetic programming.

 

[PMarky2]

Autism is neither a disease, in the ordinary sense of the word, nor is it curable. It is a life-long condition of largely unknown origin which leads principally to the brain, but also through co-morbidities to other parts of the body, functioning differently to those of the majority of the population. Autist people are different not diseased, so to try to cure them is largely a pointless exercise. Building a working a functional interface between those who are NT and those who are ND depends largely on the degree to which the two groups are prepared to accommodate on the one side, and adapt on the other, to one another's way of working.

How much 'rope' one is given to be Autistic depends on the severity of one's Autism, and the tolerance level of the society you live in. I live in the USA, which despite its self-image as 'the land of the free,' is very strong on conformity and is obsessed with fixing those who are not good little corporate drones. This is hard on those of us with ASD who function best when we can find a way of dropping out of - or at least living at arm's length from - conventional corporate round. A friend of mine, who is on the spectrum, gets really irritated when folks ask her when she is 'going to get a proper job' when she manages to make a living between her art work and a few shifts as a home help each week. She tried the proper job thing, and it stifled her.

Most so-called high functioning Autistics can get along with the Normies, but at the end of the day - and sometimes for a couple of hours in the middle of it - we need time to be ourselves. This is because fitting in requires a conscious effort, and things that Normies do automatically - like making eye contact - require a conscious effort. There is also a tendency among Autistic folks to underperform because we have to waste so much energy on masking to fit in with NT society. I am relatively fortunate in that my occupation allows me a lot of freedom to adapt the job to how I function, but it has its unavoidable social demands, and they can be exhausting. To give a trivial example, I am currently trying to find a kind way of dealing with a colleague who wants to travel with me to the next conference I am scheduled to attend. It is a nice thought on his part, but I use the travel time as a space in which to decompress before and after the conference so I do not get overly exhausted.

Basically, if you think Autism is a disease that can be, or will be, in the ordinary sense, cured you need to do some research.

 

[Strixaluco]

It is a life-long condition of largely unknown origin which leads to principally the brain, but also through co-morbidities, other parts of the body functioning differently to those of the majority of the population.

One of these being HSD/hEDS which is suspected of being by the same genes as autism - or possibly outright causing autism. It affects connective tissue everywhere in the body, and brains and nerves have plenty of connective tissue as well.

 

[PMarky2]

One of these being HSD/hEDS which is suspected of being by the same genes as autism - or possibly outright causing autism. It affects connective tissue everywhere in the body, and brains and nerves have plenty of connective tissue as well.

That caused me to ponder because although I do not have the hypermobility, I have many of the other symptoms of HSD/hEDS. Logically, if the same genes cause HSD/hEDS/ASD, it would make perfect sense that someone could 'cop' for the ASD and many, but not all of the aspects of hEDS. Very few people seem to present with 'text book' cases of whatever conditional they have. Intriguing.

 

[Strixaluco]

That caused me to ponder because although I do not have the hypermobility, I have many of the other symptoms of HSD/hEDS. Logically, if the same genes cause HSD/hEDS/ASD, it would make perfect sense that someone could 'cop' for the ASD and many, but not all of the aspects of hEDS. Very few people seem to present with 'text book' cases of whatever conditional they have. Intriguing.

Hypermobility can also be just in one or few joints, and tight muscles can mask it.

And not all of the most common joints to be hypermobile are even on the ordinary Beighton test. Like neck, shoulders and ankles.

But HSD/hEDS is definitely a spectrum regarding severity and which symptoms and traits come up the most.

 

[Sounding22]

You clearly haven't read the discussion properly. There's no "until" for me, I'm way past that point. You are, in fact, very insulting in your dismissive comments.

There's no surgery that makes an autistic person non-autistic, it is not like cancer. Brain injuries may make people neurodivergent in their own way though (usually leaning towards adhd traits) - my late husband was one example. But no surgery could have removed that because it's not just in limited areas. (oh and he later died of cancer... A metastasis in the brain.)

And indeed autism is all around the nervous system on a genetic level and that is not something you can just operate away. You'd need to change the whole brain AND genetic programming.

I’m sorry for your loss.
Now don’t think for one minute you are the only one to have lost someone very close to them.
I’ve had a brain abnormality for over 60 years and it’s the don’t give up spirit by both myself the doctors and thank god scientists.
And this extends into all medical fields.
Have you ever looked into the Pennhurst State Hospital in Pennsylvania? This was the medical field.

 

[Strixaluco]

I’m sorry for your loss.
Now don’t think for one minute you are the only one to have lost someone very close to them.

I didn't, don't you dare put words in my mouth. It was you who had hard time thinking that I could have lost someone before I told you explicitly.

I’ve had a brain abnormality for over 60 years and it’s the don’t give up spirit by both myself the doctors and thank god scientists.
And this extends into all medical fields.
Have you ever looked into the Pennhurst State Hospital in Pennsylvania? This was the medical field.

If by brain abnormality you mean autism which is the topic of this thread, seeking to get rid of it is foolish. It's like trying to change your blood type.

I don't look into US hospitals. Wrong continent. Not that I even want to become allistic - I prefer to stay ME. Without autism I would loose all my strengths as well.

 

[stickygirl]

I’m sorry for your loss.
Now don’t think for one minute you are the only one to have lost someone very close to them.
I’ve had a brain abnormality for over 60 years and it’s the don’t give up spirit by both myself the doctors and thank god scientists.
And this extends into all medical fields.
Have you ever looked into the Pennhurst State Hospital in Pennsylvania? This was the medical field.

You have an adversarial style to your words. Perhaps that is not your intention, but it is the effect, so please consider how they might be received.

Lets get one thing sorted out. Autism cannot be 'cured' any more than left-handedness can be cured. To suggest otherwise is offensive and demonstrates a lack of knowledge of the condition. We are not here to waiting to be fixed but to share our experiences and in doing so offer each other a degree of support.

 

[Sounding22]

I do not mean what ever to be adversarial in any way.
The way I look at it as I told my doctor, when I have a seizure. It is only a symptom of Epilepsy. She is a very well educated doctor but it stopped her and made her think. It’s kind of what we have with Autism, they have no cure (yet) they are looking for the precursor (lack of a better term).

 

[Strixaluco]

I do not mean what ever to be adversarial in any way.
The way I look at it as I told my doctor, when I have a seizure. It is only a symptom of Epilepsy. She is a very well educated doctor but it stopped her and made her think. It’s kind of what we have with Autism, they have no cure (yet) they are looking for the precursor (lack of a better term).

It ia not like that with autism. Autism is having different kinds of brain and neurology. What causes it are genes, which we always have.

Autism isn't like seizure, it's closer to epilepsy itself, except epilepsy you can get during life, but autism has always been three and in most cases it was there for generations before you. That you happened to confuse your doctor does not change what science already knows.

Autism is not something to cure any more than lefthandedness or blue eyes or being overly tall. Autism also comes with strengths - strong sense of justice, seeing connections between things better and faster, attention to detail, artistry in many fields... Several of the genie of the world have probably been autistic, like Einstein.

Only 1/3 of diagnosed autistic people have intellectual and/or significant linguistic disability. Of all autistic people the portion is smaller, because so many of us who don't have those impairments are not even diagnosed, especially among the older generations.

 

[PMarky2]

It ia not like that with autism. Autism is having different kinds of brain and neurology. What causes it are genes, which we always have.

Autism isn't like seizure, it's closer to epilepsy itself, except epilepsy you can get during life, but autism has always been three and in most cases it was there for generations before you. That you happened to confuse your doctor does not change what science already knows.

Autism is not something to cure any more than lefthandedness or blue eyes or being overly tall. Autism also comes with strengths - strong sense of justice, seeing connections between things better and faster, attention to detail, artistry in many fields... Several of the genie of the world have probably been autistic, like Einstein.

Only 1/3 of diagnosed autistic people have intellectual and/or significant linguistic disability. Of all autistic people the portion is smaller, because so many of us who don't have those impairments are not even diagnosed, especially among the older generations.

Just to add a little bit to this, I hope Strixaluco will pardon the presumption...

Autism is a condition it is difficult to make generalizations about. The adage, 'if you have met an autistic person, you have met AN autist person' is definitely true. No two of us are the same, but we all share certain characteristics, which is why, when they test for ASD and ADHD they pay a lot of attention to how the brain works. Mine chiefly presents as a fly paper memory for dates, historical facts, and connections, coupled with a certain awkwardness around groups of people. One-on-one with a sympathetic someone and I am fine, but when there is any sort of a crowd it is difficult for me to deal with it for any length of time and I will disappear periodically to recalibrate and give my overheating social battery some time to cool down. The "anorak" in me tends to give people I see regularly an index number, like the old train heating index numbers on British Rail. People I find easy to deal with - like my BAF and her family - have low numbers (and are all spectrum-y.) The ones who make higher demands get higher numbers reflecting the fact that they wear me out faster - in some cases, very much faster - and to be assertive/political Normies whose modus operandi I just do not get. My maximum social output is about 20, so if there are two or three folks in a room with a social index of 8, I am going to overload and feel trapped quite quickly, and want to find another room or leave. Needless to say, I tend to avoid socializing with large groups of strangers as much as work permits.

Autism does bounce around in families. I have not figured out who the unknown autistic is in my family, but I function in much the same way as my father and uncle - fairly high IQ; special interests; poor functional memory; very limited desire to socialize. All three of us are/were good at research, in making connections, and problem solving. In short, I suspect it is that side of the family that has the 'tism.

I suspect the major reason that Autism is more recognized today is that modern life is not particularly autism friendly, and rather obsessed with folks conforming to the social norms no matter how much the talking heads ramble on about inclusion.

 

[Strixaluco]

Autism does bounce around in families. I have not figured out who the unknown autistic is in my family, but I function in much the same way as my father and uncle - fairly high IQ; special interests; poor functional memory; very limited desire to socialize. All three of us are/were good at research, in making connections, and problem solving. In short, I suspect it is that side of the family that has the 'tism.

Sounds likely that it's him. His generation grew up in a different society though, which was easier for autistic people.

In my case it's dad - at least. But I'm not sure mom's side is neurotypicals either.

However, autism depends on several genes, and I suspect it's possible to get some from both sides so that they together form autism. Whereas according to research, a sudden mutation seems to cause a difficult case needing lifelong support on a daily basis.

 

[stickygirl]

My mother thinks I inherited through my father's side.

Funny how one is affected. I taught a class of 18 people for four hours this week ( with breaks ) and had no problem. Afterwards in the common room area, there was a man talking so loudly it hurt my ears and I had to leave because he made me feel panicky. Other people just remarked that he was loud but they shrugged it off.