Hi I am new here, PDD not otherwise specified,long story

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Hi all.

(This will be a bit long, but maybe there is even someone out there who has a similar story).

I am 36, female and I have a diagnosis of PDD not otherwise specified. I was diagnosed as an adult and I am a complicated case in general.
Some of my behaviours fit in an Asperger`s diagnosis (like special interests from early childhood on, some social and contact problems, problems reading body language, mild sterotypes), but some don`t.

My problems socializing and reading other people`s feelings are milder than in cases of AS, but on the other hand my scientifical intelligence has always been normal and not above average.
My verbal intelligence is high and I have started talking and reading a bit earlier than most other children. My motor devolopment was normal too, but I was in danger of being born prematurely (what in the end fortunately didn`t happen and I was born healthy).
I also tested borderline positive for ADHD (since childhood) and my "hyperactivity" mostly consists of bouts of stereotypical movements. Generally I am more on the hypoactive side and this gets even more with getting older.

I fit in some criteria for schizotypal disorder, subclinical paranoia and also always had intermittent mood elevations, problems with anxiety, sleep disorders, vivid dreams and mild obsessive-compulsive thoughts for my whole life.

I have always had bouts of excessive reading and writing, some minor issues with repetitive speech, rapid and very detailed speaking.

As a child I felt that I was different and the world around me appeared strange since I have started thinking. My eye contact has always been fluctuating. I often had one or two best friends, but mostly didn`t like bigger groups.
I have seen psychologists as a child for my anxiety and some mild inattentive symptoms, although I was otherwise good in compensating my weirdness. So I didn`t get a diagnosis of anything, other than being intelligent and highly sensitive.

My scholastic performance was good in the beginning, but declined when I was around 16 years old.
My special interests and some friends at this time were more important to me than school.

I was not really that mature for my age in some ways and so I think that I have wasted away some parts of my future.
At this time it was also suspected that I could have prodromal schizophrenia.

At age 19 I started having panic attacks with dizziness and palpitations.
I was diagnosed with ADHD, anxiety and panic disorder.

At my mid 20ies my visual memory functions started to slowly decline.
Then I got an advice to get my mineral levels in blood tested and this was when I first learned that I have mildly decreased levels of copper and ceruloplasmin. All my other nutrients and labs were normal.
I then was further checked for Wilsons disease which was negative two times, although the brain symptoms would have fit in. My urine copper was even low.
So I got copper supplements despite having no clinical symptoms of copper deficiency.
They unfortunately also didn`t work to restore my cognitive function and my panic attacks and didn`t bring my copper and ceruloplasmin levels up too.
I had my first MRI of my brain which came back normal.

Then a psychiatrist suspected Aspergers syndrome.
I was tested and had an average IQ of around 93 with low numbers in visual, spatial and task-related intelligence and language function mildly above average.
I was shocked that my general IQ was not that high as it was as a child and teenager.
My final diagnosis was PDD not otherwise specified. My parents were also asked about my behaviours as a child.

When I was 30 my right arm stopped swinging automatically, now my balance is a bit off and my left arm stopped swinging for the past year too. I also developed internal vibrations and slowness (but just with alternating movements) and sometimes there are elevated reflexes all over my body. This all has happened from age 30 until today.

A neuropsychological exam revealed mild cognitive impairment (MCI) in visual and executive domains, while my verbal and long-term memory is rather well.

For the past two years frequent visual illusions (mistaking things for people) and more problems with judging distances (also the nearer ones) came into my life.
Unfortunately I am on my way of unlearning how to drive.

Brain MRI last year and some years before didn`t detect anything visible again.

So I have a lot of other psychological stuff and I also fit in in some organic brain disease like frontal lobe syndromes or whatever.
Nobody really knows what is all wrong with me and if my PDD is connected to my other unresolved symptoms or not.

As I am a researcher (I think this sounds familiar ) and engaged into helping myself, I have found out about some cases of people having low numbers of ceruloplasmin and copper in blood (often also in urine) and they don`t have Wilsons disease. But signs of a similar neurodegenerative process nobody really could diagnose.
I strongly hope this is not the case in my case too.

So I recently have decided to try some supplements again (zinc sulphate and some other stuff generally good for the brain).

My PDD is not the thing that bothers me most (some aspects of it maybe), because I like my special interests. They are not these typical technical things you would normally expect. I always had special interests consisting of philosophy, spirituality, animals, cultures and countries, medicine (more compulsorily in term of self help, especially for my brain) and also alternative medicine.

I am a freak and have always been, but I am glad that I am high functioning. Not only with my PDD, but also with my MCI.
I have no children, live with my partner who is very supportful. We have two cats and I am working in a workplace for handicapped people. This has some advantages and disadvantages, but I am no more capable for the regular job market (and maybe have never really been).
ADHD medication also worked for just a few years and I was always moving from job to job, unemployment etc...

So I hope that I don`t get rejected because of not being "autistic enough" and my strange comorbidities.

I am looking forward to the exchange with other people on wrong planet.

Welcome to Wrong Planet!

Welcome to WP! I hope you find some things to interest you here. If you sometimes looking for something to occupy your time then I think you should explore WP to find the parts that interest you.

- Being a diagnosed Autistic is not a requirement for being on WP.
- Being a suspected Autistic is not a requirement for being on WP.
- Being NeuroDiverse is not a requirement for being on WP.

An interest in the topic seems reasonable.

Good manners are welcome, too.

Welcome to Wrong Planet!

First off, Welcome to Wrong Planet.

Indeed this is a long introduction. It sounds like you have found the right place. Those individuals with Asperger's Syndrome (Aspies for short) have a variety of differences from neuro typicals (NTs). This condition is normally associated with males. But it also exist in females except they have learned to hide their traits better. But as female Aspies grow older they find it harder to hide their traits and thus at around age 35, they experience problems of extreme depression and multiple personality disorder.

Perhaps one bit of information is that many neuro diverse (NDs) have problem traits but the main point is that they tend to be very different from each other.

You went on to discuss Vivid Dream. This is very interesting. Let me try and explain Vivid Dreams. You are multiple people. Your body is divided into two parts. One on the left side of your skull and the other on the right side. They are very different brains. One exist during the daytime. The other part is your night time brain that exist during REM and deep NREM sleep. These two sides of your brain can work together if you let them. There is an old saying that goes something like this "if you have an important decision to make, it is important to sleep on it". The reason is because it allows both sides of your brain to work together to solve a problem.

You wrote, "At my mid 20ies my visual memory functions started to slowly decline."
"Then a psychiatrist suspected Aspergers syndrome.
I was tested and had an average IQ of around 93 with low numbers in visual, spatial and task-related intelligence and language function mildly above average.
I was shocked that my general IQ was not that high as it was as a child and teenager."

This is interesting but also a little strange. If you have an IQ of 93 that is not good. Also a person with an IQ of 93, in my humble opinion would not be trying to figure out what went wrong. Something else is afoot.

So you are experimenting with vitamin supplements to try and improve your mental ability. Interesting. In general, I have found that most people get sufficient vitamins from normal eating their food. I have found that one supplement provided me with brain health. It is called Cellular Health. It is manufactured by Juvenon. I have been taking it for over 20 years and I consider it the main reason why my mental health is still there at age 75. It contains 1,000 mg. of Acetyl L-Carnitine and 400 mg of Alpha Lipoic Acid. Anyways this supplement seems to keep my brain alive.

@jimmy m

Thank you for your reply.
You describe a lot of the issues I experience.

I have never thought that autism and PDDs are more common in males than in femals, so I have learnt something new.
Interestingly I have never had gender identity problems, but I also have never felt typically female or male concerning my interests and some styles. Rather neutral or mixed.

Luckily I have not experienced extreme depression, just the "milder" episodes, but some periods of extreme anxiety. I even know a bit how mild mania feels when I am into some positive special interest.

My IQ problem is the thing that concerns me, also my decline of motor and visual perception issues.
That is the reason why my average IQ is around 93 points. My verbal intelligence, longterm memory and the understanding of nonvisual input like simple facts is still normal to a bit above average.
So if this weren`t the case, I wouldn`t be able to research and write this much.

My cognitive and motor problems first appeared in adulthood and resemble the neurological issues of some copper metabolism disorders (especially Wilson`s disease what has been ruled out) and indeed my copper labs in serum are not normal.
But I don`t have problems with other nutrients and there are a few infos on the web concerning people with unknown neurological copper disorders (other than Wilson`s, copper deficiency and the other known issues).
That is really weird.

My PDD must not be necessarily connected to some of my other symptoms, but I am glad that I have the ability to research and try some things out.

@all

Also thank you for your hearty welcome

"Understanding a 93 IQ Score"

average intelligence...that is, normal...that is, similar to most people...

Well ^{Granted, being like most people is not necessarily a good thing.}

@Double Retired

I know that my intelligence quotient is not that bad or worrisome, is just a bit below the average adult person, who has around 100.

But I have scored around 115 (general IQ) when I was a child. That is slightly above average. So many people (including myself) have always thought that I am highly gifted.

Now my verbal IQ is still above 110, but my task-related, visual and spatial IQ is only around 74 points. That is really low indeed and it has to do with my cognitive decline in these areas.

I am glad that other parts of my cognition are still high functioning.

I think you are right. Something is Off. You have lost abilities that you use to have.
I will go back many years ago, say around 65 years ago.
As a child, I was a poor reader, an extremely poor reader. Basically the only books I read were Comic Books. In my first year of high school, they realized I had severe problems reading so they put me in a special class, a very special calls. There may have been only one other student in that class. The class was called speed reading. What the class taught me was How to Read. In most reading classes you begin with the first word in a paragraph and then you read the next word and the next word, until you finish the entire paragraph. But in speed reading they teach a totally new type of reading. You read from the inside out. You find the most important word in a paragraph and then look for the second most important word in the paragraph and begin to construct the thought pattern from the inside out. It was a very strange way to learn how to read but it worked. That was the key point.

So whenever I get to a complex discussion, I can read it without any difficulty because I read from the inside out.

In reality because of my brain structure, my mind works too fast. It is like a bullet. It moves so fast that I forget what I have read. A paragraph may contain 15 sentences. Each time I read a sentence and understand it, I forget what the previous sentence said. I get lost reading the various sentences over and over and over again. But if I go into Speed Reading mode, I can dissect a very complex discussion with ease.

It is not that I am a slow reader but rather I read extremely fast.

Something has affected your reading ability. But what? What has changed? You focused on vitamins.
The two things that come to my mind is food and exercise. Is your diet good? Are you getting enough nutrients or taking the proper vitamin supplements? Are you performing sufficient exercise. I generally walk an hour per day. I walk up and down a steep hill. It is a little like rock climbing. At 75 years old, it keep my body working properly.

I'm in Mensa, married a Mensan, and...naturally...have met a lot of Mensans.

We're not as "bright" as you might expect...

...except when taking a test with a bunch of arbitrary questions with little relation to the real world.

I have always been a speed reader and speed talker and also started reading, talking and writing earlier than most other children.
First they thought I may have nonverbal learning disorder (NVLD). But I didn`t have clumsiness and spatial reasoning problems as a child and on the other hand special interests have always been present. My visual IQ has been about average in childhood, but the verbal IQ has always been higher.
What fits in NVLD ist the fact that my communication skills lie somewhere in between high functioning autism and neurotypicals.


I am now 36 and losing some cognitive and physical skills for around the past 10 years. That is what bothers me.

The reason why I am so much into this copper metabolism issue is the fact that I have no other vitamin deficiencies, also no anemia or protein deficiencies. Just low serum copper and ceruloplasmin, which also cannot be corrected by taking vitamins and also doesn` t fit into copper deficiency.

Neurologically many of my symptoms that started in adulthood resemble Wilsons disease (genetic copper overload) a lot, but it isn`t WD.
So I started researching and found some information about other possible explanations for this combination.

If you are interested:

https://pubmed.ncbi.nlm.nih.gov/731276/

https://link.springer.com/article/10.1007/BF00314480

https://pubmed.ncbi.nlm.nih.gov/17307325/

https://www.sciencedirect.com/science/a ... 7305000469

Maybe these "rare" cases are not that "rare" in reality, but most of the scientific world isn`t just that interested in it.

I have been out of town for a few days. So sorry I haven't responded yet. I will dig a little deeper tomorrow. I did a quick look at the thought that your problems might be due to levels of copper in your body.

According to the internet, low levels of copper in the blood can result in anemia, low body temperature, bone fractures and osteoporosis, low white blood cell count, irregular heartbeat, loss of pigment from the skin, and thyroid problems.

So if you had a copper deficiency, it would be pretty obvious.

On the other hand what happens when you take in too much copper.

Too much copper can cause nausea, vomiting, stomach pain, headache, dizziness, weakness, diarrhea, and a metallic taste in the mouth. Copper toxicity is rare but can cause heart problems, jaundice, coma, even death.

So my first thoughts were if copper was the problem, then their would be several other side effects that would become very obvious.

I will look some more into this subject in the next few days.

Okey but the copper issue is more complicated than deficiency and toxicity (don`t want to sound smartass, as most people don`t research about it. An issue I can totally understand if one is not affected.)

I don`t have anemia or other low blood cell counts, but I have easily bruising (with normal coagulation), histamine intolerance, connective tissue problems (not all teeth have developed and inexplicable inguinal hernias as a child).

In my late teens and mid twenties I developed a lot of psychiatric and later also neurological symptoms not related to my PDD.
Like loss of automatical arm swings, internal vibrations, cognitive issues, problems with visual perception, balance problems, slowness with alternating movements and so on, some of them seem to be progressive (Wilsons disease can cause such things too, but WD isn`t the problem I am having).
I too got problems when taking iron tablets for dizziness and felt really sick for around a year or more in my early twenties.

If you want to dig in deeper you could read about my links (but you don`t have to feel obligated).

Ahoy-hoy.