Former UK Health Secretary and over diagnosis

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This is hitting all my 'Do I belong here?' anxieties and doubts! Probably not helped by having both ASD(Asperger's) & schizophrenia/schizoaffective diagnoses. I don't consciously/ deliberately mask(not good at processing and adjusting in real time) but I'm very much a 'people pleaser'.

Adaptive functioning majorly below what would be expected given level of intelligence. Have much more help and support(from family) than the average ASD level 1 person.

• Strengths: VERY SUPERIOR VERBAL & NUMERICAL ABILITY SUPERIOR–VERY SUPERIOR PATTERN RECOGNITION

• Diagnoses: ASD (Asperger’s); Schizophrenia/Schizoaffective

• Visual processing

• Visual crowding difficulty[ASD/Mixed]
• Slow digit‑symbol substitution [General]
• Poor mental rotation [ASD/Mixed]
• Difficulty with visual puzzles [ASD/Mixed]

• Memory

• Poor visual memory [Mixed]
• Poor autobiographical memory [Schizoaffective/Mixed]



• Executive function

• Difficulty organising and planning [General]
• Difficulty prioritising multistep tasks [General]


• Motor

• Poor hand–eye coordination [ASD/General]
• Poor spatial awareness [ASD/General]

@BTDT
If I'm not mistaken, the possibility is higher in people with autism.
*Your real problem might be that it's not a problem.
But it's a very possible condition along with autism. There are many studies on this.

Usually, consciousness in non-autistic people (I'm writing this because I don't have any studies to evaluate on autistic people at the moment, so as to clearly disambiguate them; I'll explain why later).

One of these could be a lack of theory of mind in some people.
So, essentially, not a lack of understanding.

This in me, even though I didn't have it, was just a slight delay in perception.

I would distinguish between three levels of awareness.
From a young age.
So, even though I know at 3 or 4 years of age, one can already be aware of what used to be nosographically assessed as Gender Identity Disorder.
Now, the diagnostic label is different.

The second stage occurs around 9-13 years of age (in my case, 9 years).
And very late: this is for various reasons, including the rejection of the *Natural state of the mind, either towards the masculine or the feminine.

If you feel like it (only if you feel like it: think carefully because it's not easy to ask for that diagnosis and it's an extremely delicate decision for you to make), you can turn to people who evaluate gender dysphoria and autism.
Don't choose doctors who aren't in the field, because you'll find yourself:
embarrassed, and above all, they might not understand the diagnosis firsthand.

At 62, I think I'm reading this; in your place, I wouldn't do anything other than get informed.
Then you can choose what to do and what not to do.
Sorry, I expressed an opinion on a sensitive topic.
I've never written about it.
I'll never write about it again.
Because it hurts me just to think about it.

By the way, my features, especially my face, were feminine.

What makes the difference is the mind: your belonging must be clear.

From what you've described, you may have some obviously feminine traits. Many people thought so about me, but they didn't tell me until late. I don't know. I was perfectly aware, even if it was nine years late.
What strikes me is that in your case it was even more evident, and they never helped you get an evaluation.

The rest must be disambiguated from pathologies because there are people who don't have D.I.G., but have other conditions; doctors know how to distinguish them.

My last comment on this specific topic.

P.S.: The percentage of people with autism spectrum disorder among transgender people is between 7.8% and 23.1% (Shumer et al., 2016; de Vries et al., 2010).

This is just one of many studies, as you'll notice, that makes you understand the percentage, which is very high.

They are difficult to diagnose.
ADHD is often a hastily formulated diagnosis.
*Then there are variations.

This is a long discussion.
ADD is the same: diagnostic labels are easily given without thorough investigation.

While with autism diagnoses, detail upon detail is sought instead.
Then there are comorbidities and others that complicate the picture.
Anxiety and depression, these too are mixed up in autistic states, as they easily coexist together.

Alone: ​​if anything, they are misdiagnosed.
Depression is not diagnosed well.
There are at least 8 different types.
Including further ramifications.

Then everything falls under depression, even things that a normal person would obviously experience, let's say a very dear person dies.
Rather than treating the caseload with psychotherapy, it's clear that some people need either to be alone or to have professionals help them process the death, for example.

My parents died: as I am and over the years, I haven't had any such feelings.
I may be a unique case, but perhaps not.

As you write: these are cases of people who self-diagnose or are diagnosed hastily, who create problems for those who then suffer the consequences (us).
Doctors who make hasty diagnoses should be removed from their role. Because some assessments are too quick.
And they lack descriptive reports and specific tests.
They need to be detailed.

Most of them are.

Then what I don't understand is:
The case of the former minister who talks nonsense.
People who self-diagnose.
Honestly, until I had at least two diagnoses in different places, I didn't write about myself on forums.
Now everyone writes about things they might not be able to prove.

At least one diagnosis should be posted on specialized forums.
I know it conflicts with privacy, but then whoever writes can't prove anything.

Even that former minister: he's basing his comments on his impressions and reflections, not on medical data, and he's not a doctor (I don't think I've ever read one), and in any case, he doesn't seem to specialize in autism.

A statement like that should be subject to cross-examination.
But that doesn't happen.

It's likely that, being a former minister, he has the truth in his pocket.

My ADHD assessment seemed too quick, but it was during the pandemic so it was all done via video call. But I don't doubt my ADHD diagnosis for a second, as I can strongly relate to so much information about ADHD that I didn't know about before. The woman who assessed me was sure too, and said I scored seemingly high on the ADHD criteria. Even though every ADHD symptom is basically an autism trait, because, hey, what isn't an autism trait these days?

What isn't an autistic trait?

My doctor yesterday.
She's not even remotely neurodivergent.
A beautiful person, a special human being.
But I couldn't get her to understand some things.

In short, I couldn't communicate with her.
I wanted to get out of her office.
Instead, she spoke and helped me with a lot of things, even treated a bad wound, and then offered to remove my stitches when the time came. Free of charge.

She's like a fairy from a fairy tale: she speaks softly, pays attention to details, and I couldn't see them at the time.

She read 12 pages of medical evaluations and treatments.
When I go there, I'll bring something nice but informal; I don't want to be misunderstood.

I'll thank her, even if it's a bit like talking to someone from another planet.

Or I am for her: more likely.

She's truly hyper neurotypical (allistic)

Then I don't think we'll ever see each other again.

Well, it seems every symptom of dyspraxia is a symptom of autism, even though I don't consider myself dyspraxic. And every symptom of ADHD seems to be a symptom of autism too.

You know: it depends.
Sometimes it's along with autism, sometimes not. Just like ADHD and what form it takes.

You have a diagnosis of ADHD. You recognize yourself in it.
While you're hesitant (sorry if I misread) about your autism.

Sometimes I write a bit clinically and seem very cold and distant.
But that's not the case.

I tend to analyze things very logically.
I'm an INTJ, which is one of the Myers-Briggs personality scales.
It's not that I enjoy being one, but that's the way it is; it always comes across as the same.
You certainly have some unique characteristics compared to many of us, which doesn't mean the diagnosis is wrong.
You're just a human being, like me. Even though we're different, we can belong to the same autism spectrum.
We just belong to it in different ways.

A friend of mine with Asperger's was an administrator on a forum.
We exchanged messages very often.
She once wrote to me to never question other people's posts.
I immediately agreed with her: because I had used my mindset and therefore evaluated every detail of her post.
It didn't seem true to me.
For me, something is either true or false; I don't have half-measures.
I tend to write clearly.
If a diagnosis raises doubts and you feel like getting another, try getting another.

Remember one thing: the characteristics that seem specifically autistic to you may also include yours.

You experience them differently.
But it's tests and medical evaluations that can clarify any doubts you may have.

I, too, am missing several pieces of a complex puzzle.
I have no doubts about Asperger's autism.
However, I know that HFA and Asperger's are different things, even if they are similar.

Not the same thing. Not that one is better than the other.

Or vice versa.

The word Asperger's remains in my diagnoses. But HFA level 2.
Plus, I have several comorbidities.
Some aren't even fully explored because, again because of the way of thinking, each diagnosis must be detailed with specific visits and tests.
But it also has to last the necessary time.

I have a very detailed report of a scientific study I was involved in.
But it lasted almost a year.

Many people get a diagnosis after one or very few visits.

Psychiatry would have been my choice, but then I didn't have the time to graduate.
My family's financial resources didn't allow it.
The rest was easy for me.
Because I liked the subject.
Then came the darkness: a sort of hikikomori black hole.
I hardly slept at all.
I studied.
And so much more in the few square meters of my room.
There were times when I didn't leave the house for a year.
I've come out of that darkness.
I still have a lot of deficits to fill.
And an unlived social life.
I had to learn social behaviors and things to do from scratch.
Now I know enough, but I have huge gaps.
Every year that passes is worth 10 compared to the average person.
But because I have to reach milestones that are useful to function.
I also have areas where I've reached limits above the average.
Others where I'm far behind.
Time passes and I have to catch up very quickly.
I don't want to throw my life away, also because there's no other after that.
I'm also partly tired of always having to catch up, or of making mistakes related to social naivety.
Or of not explaining oneself socially.
Of understanding other people's sentences literally.
While literally people generally never understand them.
I have sensory problems.
Now, among other things, I've messed up with a nasty aftermath of a bike fall.
I reacted very coolly.
However, I lost consciousness for a few moments after the fall.
Moments in which I don't know what happened.
Half my face feels like it's been a Mike Tyson fight.
I'm on drugs and taking side effects, waiting for the results, and with a prognosis of over a month to recover.
I already feel lucky not to have lost an eye.
I was very close.
My appearance is something I care about; even if it changes with time, I maintain neotenic features.
In life, you should never procrastinate.
For now, I'm fighting a kind of adverse fate.

So having grown up in the before diagnosing before Autism was thought as seperate diagnosis from Generally Mental
R'tardism. Not my words just words from the times I grew up in.And issues in those days were not terribly supportive.
It was from a time,When families denied any type of mental health issues. It was a mark of abject shame for the family.
This shadow of diagnosis may still exist in places.So you do not want to think it could run in the family. Or a failure or sin committed by the family somehow. Well turns out it is genetic . Snd worse if you have one severe incidence of disgnosis . It becomes almost overwelming for the family budget immediately. Medical Health care or special schools were for very wealthy .Easier if possible to assign the child to be a ward of the State.And institutionalize them.Generally resulting in worst outcomes for the person.
So Yes very much accurate diagnosis in important, for the Society ,State and families.And importantly best care to give best outcomes. This is not Rocket Science anymore.Just the willingness of Medical institutions and Gov. having the Honest interest.
CONSIDERING THIS: I wish to offer a piece of the Research By a Doctor Amens extensive medical Institions.
Autism Accurately Diagnosed with Brain SPECT Imaging

Brain Blood Flow Shows Pattern Consistent with Autism

COSTA MESA, CA: The diagnosis of Autism Spectrum Disorder (ASD) relies on history and behavioral observation, lacking reliable biomarkers. Researchers from Amen Clinics and the University of Southern California performed what is believed to be the largest ever analysis of brain SPECT (single photon emission computed tomography) scans, a nuclear medicine study that evaluates blood flow and activity patterns, on 928 persons with ASD obtained 9 different sites to investigate whether these scans distinguish ASD from healthy controls. The age range of patients were from 13-67 years.

Using sophisticated machine learning algorithms, high levels of separation were obtained. The areas the most predicted ASD were found in the cerebellum, anterior cingulate gyrus, amygdala, frontal and temporal lobes.

Lead author Daniel Amen, MD, child psychiatrist and founder of Amen Clinics said, “Currently, the diagnosis of ASD includes a clinical history, mental status examination and structured screening tools, leaving clinicians in the dark as to the underlying physiology. At Amen Clinics, we frequently see increased activity in the anterior cingulate, leading to obsessive behavior, and decreases in the temporal lobes and cerebellum, which are often associated with learning issues. Having SPECT scans on ASD patients has helped us better target treatment.”

A health minister has to weigh between preventing their country going bankrupt or taxes going up so high it hurts the economy, and helping people. If the country goes bankrupt it will hurt autistics. It is easy for a genuine person to err when making lesser of two evils choices. And we know ministers are politicians meaning personal and political interests come into play.

Millennial and younger autistics have to deal with the assumption that their claims of being autistic are the result of self diagnoses because it sounded cool, doctor shopping, or doctors wanting to please people for financial reasons. And now in the states because they were poisoned in the womb by big pharma.

Gen X and older autistics have to deal with lack and dated understanding of autism and a mentality that says don’t burden others with your problems. My parents came from what they call the silent generation. That generation was called that for a reason. Growing up in the Great Depression and during World War Two personal concerns were not a priority. Mental illness or conditions as Jakki pointed out was viewed as a shame for the whole family to be hidden at all costs. The boomer rebellion and the counter culture was real but a lot of our parents assumptions trickled down. Gender was considered binary. As a guy if you had to think things through you were told by peers “Don’t be a wuss.“. Wuss was often synonymous with homosexual. If people thought you were a homosexual as a high percentage of autistics are it went very badly for you.

All of the above is to make a point. My generations upbringing predisposes us to view the vast increase in public discourse about autism as suspicious. And now we have in the states renewed claims that they did not know any people with Autism when we were kids.

Yes it makes us look bad.

I have always contended that perceptions of epidemics of autism over-diagnosis and wannabes is a much bigger problem the actual over diagnosis and wannabes.

In the last few years I have changed my mind about one aspect of this. There has been a big push to diagnose earlier and earlier. If children miss a marker parents panic. Children develop at different rates. This used to be considered normal because it is normal. Many neurodivergent traits are typical toddler traits that they will grow out of. Let kids be kids. The above is not an all or nothing proposition. Some children do need very early diagnosis.

Super Jakki!


Do you mean the Spect scan?
Wow!
Can you provide us with a bibliographical reference?
I have to look at the study on this.
Thanks!

Regarding problems hidden from people out of a sense of shame: yes!

It used to happen here too: now much less, almost never.

It's just better not to say you're autistic because, at least here, it's used against us.
Let's say that a lot of research focuses heavily on heredity. Here I have to be politically correct and write that the causes are multifactorial, even if the genetic ones are increasingly prevalent.
There are some on monozygotic and fraternal twins.


"Autism: 83% of cases are genetic. The major study conducted on twins
Autism? It depends on genes. Approximately 90% of autism spectrum disorders are related to hereditary factors, while only a small portion are attributable to external factors, such as exposure to pollutants while still in the womb.

This is demonstrated by a study conducted by Sven Sandin of the Icahn School of Medicine at Mount Sinai in New York, published in the scientific journal JAMA, which places hereditary factors in the dock as the main cause of autism.

The study examined 37,570 pairs of twins, 2,642,064 pairs of non-twin siblings, 432,281 pairs of siblings with the same mother and different father, 445,531 siblings with the same father but different mother, and 14,516 diagnoses of autism in the entire sample."

You know, ASPartOfMe...
The gaze of children.
That's revealing.
If it gives you reciprocity.
or not.

Years ago, I met some autism researchers who collaborate with many US universities (Trump permitting, hoping things don't change, Italians work very well with the US).

The specialist patented eye tracking. He's not the only one, I'll start by saying.
But he's a genius, as one of his former students said.

He recognized me and immediately took charge precisely by the way I looked.
That can't be mistaken for an expert *Medical*.
It should be emphasized that parents have many fears.

Some, including two of my relatives, were afraid their daughter had trisomy 21.
The girl didn't have trisomy 21.
It looked that way to them.
Even to the pediatrician.
Other medical specialists have accurately stated that this wasn't the case.

In fact: although she's a bit unpleasant and has a strange, irregular growth pattern on her lower limbs, she wouldn't have any of this. She lives in Spain and speaks several languages.
I believe she works in Barcelona.

§
As you write, with good medical discrimination, some children require early diagnosis. It would have changed my entire life.

At 4 years old, I realized I had a lot of problems, including walking on tiptoe, which I maintained until well into my thirties.

I won't write about sensory disorders because it would take too long!
And then there are other things I've already written about here in the forum.

§

Imagine a child who at 4 years old realizes his deficits and these are ignored (denied) by everyone.

They saw an alien in me.

Because I was doing very well in school.

And in almost anything I tried.

The problem was that I grew up dysfunctionally.
I still live with the disasters of undiagnosed.

What can I say? I'm Gifted, but that doesn't mean anything.

I finished my homework almost immediately.

I was seen as extraordinary.

I had to, and still have to, find solutions to avoid succumbing.

This is absolutely not okay; it should have been done differently, and it could have been done differently.

Besides, on both sides of my family, there are so many autistic people that they call it a genetic defect.
Imagine that all my cousins, and there are many of them, have adopted children from former Soviet countries.

In any case, the fact remains that the lack of medical care in Italy is disheartening in certain cities.
In others, there are incredibly advanced centers; in some regions, it's not like that at all.

Asperger's (who aren't HFA, I'm sorry. Research confirms this, but it's based on a very old 2013 DSM-5 Ter manual, which is based on very old and discouraging studies.)

Now they'll cause further disaster here too, with this government that has few, wrong, and surreal ideas.
A fascist government where people with disabilities shouldn't even exist and demands an unlikely racial theory of people who are superior or successful in every field and detail.

This is serious because we're far ahead of other nations like France, which denies too many things. With all due respect to the French, they can't hide behind Lacanian theories or denialism.

I write France because it should be an important nation.
Even if it's economically failing and will collapse.
I sincerely hope not, because that would be something no one would want.
They are also living off 14 African colonies in which they speculate and use their own currency, the Franc, which doesn't exist in Europe; the euro has been in use since 2002. Among their African powers, there will be nations that will chase them away very quickly, and it will be a problem for them.

We gave up all our colonies.

Over a decade ago.

Africa will be colonized by a superpower like China, and some states like Nigeria will become very strong economically. I believe they will rise to 4th place in the world in the next decade.

Meanwhile, we are the leading arms producers in Europe.

How wonderful!

Yes, okay. Economic management is fundamental.
But at least we don't go bankrupt because we pay for healthcare, which doesn't give us much back.
We give them the money, constantly.

Healthcare here is still public, not just private.

There's that too: if you have the opportunity to use it, fine!

A sensible government plans all expenses well in advance.
It's not that they're unpredictable.

The point now is that they want to cut welfare with our money.

To pay a fixed 5% annual gross domestic product to produce weapons and prepare for wars.

That's what they do.

Strangely enough, the money isn't lacking there; it's always there.

Since they've made deals against us with Trump, we'll pay four times as much for gas and oil as we used to pay at prices four times lower.

Unreal.

And then the trade tariffs: who needs them?

We can overcome them as we please.

I'm sorry about the loss of trade with the US.

But the way it works now, the economies are very different from how the Trump administration perceives them.

It doesn't work that if you impose tariffs, you benefit: if anything, the opposite.

It works because we all get our supplies from China and Asia.

There, our technology and more grows without imposing sanctions.

They've raised ours to 30%: we are a friendly nation, not a rival nation.

Europe will then do the same, and in an extremely harsh manner, in retaliation.

But what's the point?

After decade of diet an exercise I now have an hourglass figure. 30B-24-34 inches, 5ft2in, 102 lbs. I grew out my hair so it reaches the middle of my back. I shop in 2 inch heeled booties or platforms. Some of it has to be genetic as many CIS women have great difficulty in their quest to have an hourglass figure--or at least the thin waist part.

Fortunately I live in a place where transgenders are reasonably well accepted in both legal rights and by my friends and neighbors.