Neurodiversity

Thanks to genetic testing I finally found out in 2022 aged 63 after my neurologist having my whole genome genetically tested what my disability is and it's rare . I have a mutant gene in my brain receptors. Just thought I was weird for 63 years. Found out thanks to my cardiologist when I was 62 I was also born with hole in the side of my heart. But where it is it's safer to leave alone unless I get chest pain luckily I don't .

Only reason I finally found these things was because I moved over 100 miles to the north west in 2019 and joined a GP practice that cared and sent me to see the consultants I had needed and they cared . They didn't fob me off . And on medication to help with both conditions but no cure for either .

But for my hereditary neurological condition found a group who also have this rare hereditary condition. I was the first ever patient to have it at the top neurological hospital here . But having the group which is worldwide but started by a Brit over 15 years ago as he didn't know anyone with there are just over 1,100 of us there . Spread all over the world . Many like me had late diagnosis. Luckily the mutantion I have means my parents where carriers and had 50/50 chance of having a child with it . Because of my mutant means I have it but not a carrier for it . My brother doesn't have it nor a carrier..So our children and my grandchildren haven't got it or carriers but there are different mutantion letters and numbers for same condition which means if one or both parent has the neurological condition then they are carriers and their children will have the condition and are carriers and can run through generations . But we have same symptoms but like anything even though people with same letters and numbers because all humans are unquie we have things that are unquie to us .

For me my whole life makes sense I like others with this hereditary neurological condition have visible and invisible disabilities. Most noticeable is body movements have what is called a strange walking gait 😂😂😂.

I’m neurodiverse and have several family members who’ve been affected. I know what a major difference a diagnosis can make.

I hear all the negative comments too. No there weren’t any neurodivergent people when we were children simply because no one recognised it, we were just odd or simple. Yes, some people have seen it as a bandwagon to be jumped on which is making it much more difficult for us. Finally, the world moves faster and expects more which makes it harder for us to fit in with the normative world

Look at it this way, normative people are jogging along on the flat while the neurodiverse have to run uphill and jump hurdles to achieve the same end.

Having 2 neurodiverse GC, I am a firm believer in getting a professional diagnosis to see what that person needs to go forward in education and life.
My 2 GC have come on leaps and bounds since their diagnoses years ago. They went to specialist schools and were no longer round pegs in square holes. They both had specialist teachers with the appropriate resources and much smaller class sizes to give them the best chance to achieve their potential. I shudder to think where they would be now if they had been left to flounder in mainstream education.

goose1964
Your description is exactly what my step daughter does.
We have gone from cake making with wonderful designs. She made her father a birthday cake shaped as a tool box. Then sewing. Not happy with just a machine, no, all the gizmos that go with sewing. Then to deep sea diving, then to gardening.
I will add that she is brilliant at everything she takes on.

teabagwoman Your perfectly correct. In days of yore neurodiverse people were just thought of as odd.

We have neurodiverse family members, diagnoses, in most situations help navigate their school years.

In our experience there are still senior school teachers who either have little knowledge, experience or emotional maturity when dealing with neurodivergent students.

It’s getting the diagnosis, CAMHS have horrendous waiting times.

Science and medicine have moved forwards with genetic testing and recognition of neurodiversity- but some elements of society have not caught up yet!

But is there not in any case an increase in neurodiversity that deserves examination? I can't recall anyone being thought odder or weirder than anyone else when I was a child/at school.

Looking back to my schooldays there were plenty in the C and D streams that had learning difficulties, they didn't have labels on them, after school they took practical jobs that they could do. Many started their own businesses, a few made a lot of money.

winterwhite

But is there not in any case an increase in neurodiversity that deserves examination? I can't recall anyone being thought odder or weirder than anyone else when I was a child/at school.

In my school days in the 50's I can remember children who clearly struggled with learning. They were called backward then. One boy who went all through Primary school with me was a very timid boy who always looked untidy. He sat on his own at a desk right in front of the teacher and spent his time, colouring, making things out of plasticine and raffia. Sad, really.

petra

goose1964
Your description is exactly what my step daughter does.
We have gone from cake making with wonderful designs. She made her father a birthday cake shaped as a tool box. Then sewing. Not happy with just a machine, no, all the gizmos that go with sewing. Then to deep sea diving, then to gardening.
I will add that she is brilliant at everything she takes on.

teabagwoman Your perfectly correct. In days of yore neurodiverse people were just thought of as odd.

Goose1964 (and Petra's stepdaughter) sound just like me DH, our kids, extended family, many long-term friends and work colleagues because... those are exactly the kind of people we're drawn to and like spending time with. Energetic people with an ever expanding skillset who are always making or planning something new.

Until this thread I've just regarded us as very capable people who don 't know the meaning of boredom.

Honestly, I don’t understand why getting into something, pursuing it to the highest level you can and then moving on to something new is neuro-diverse.

That’s what Ive done all my life and I think I’m quite ordinary.

I mean why isn’t that regarded as the norm and sticking at something for a long period of time, regarded as diverse.

Or why are both just not normal but different personalities.

I can remember, in primary school in the late fifties, there was a boy who got the ruler nearly every day. He couldn't pay attention for long, he disturbed other pupils and was generally disruptive.

Today, he would be diagnosed, probably with ADHD, which wasn't recognized at the time. He probably needed more specialized teaching in a setting suited to his abilities.

Lathyrus3

Honestly, I don’t understand why getting into something, pursuing it to the highest level you can and then moving on to something new is neuro-diverse.

That’s what Ive done all my life and I think I’m quite ordinary.

I'm starting a new group for people who are Undiverse.

Send me some nail clippings and £100 to find out if you qualify.

My concern is how you define someone as "normal" so you can use that as a base to decide what is not "normal".
Looking at my friends we are all very different in the things we are good at and how we cope with different situations and life in general. Perhaps only one is us is "normal" but which one?
Perhaps those who of you who have been diagnosed as neurodivergent are how all of us "should" be.

winterwhite

But is there not in any case an increase in neurodiversity that deserves examination? I can't recall anyone being thought odder or weirder than anyone else when I was a child/at school.

Well.I certainly was considered 'odd' when I was at school. By teachers, by other girls, by family. One of my teachers once uoted Aristotle to me'Never genius without tincture of madness.

No I am certainly not a genius, but it was the 'tincture of madness', as it was seen, that separated me out from the others. I found other children confusing, I didn't understand how they thought or acted and I didn't understand why they did nto share my enthusiasms for various subjects. One of my mother's friends was really surprised when I got married, she saw me as 'odd', so obviously no one would want to marry me.

There were other 'odd' children at school, who did not fit in including at least one who I think had ADHD.

I’d love to have been recognised when a child as ADHD. I was never particularly naughty or slow to learn in fact probably smart passing 11+. But impulsive, sidetracked easily in fact so many relative things. I’m aware that now it’s linked with being double jointed, migraine and so much more.
I don’t want meds now however but I do recognise I need help sometimes. But luckily have a wonderful partner who gets me.
It’s just that life could have been so much h easier.

I'm a happy soul, I assumed everyone else was odd.

Because, to me, they were.

All my siblings? Odd. Other girls at school? Odd.

Sorted.

dogsmother

I’d love to have been recognised when a child as ADHD. I was never particularly naughty or slow to learn in fact probably smart passing 11+. But impulsive, sidetracked easily in fact so many relative things. I’m aware that now it’s linked with being double jointed, migraine and so much more.
I don’t want meds now however but I do recognise I need help sometimes. But luckily have a wonderful partner who gets me.
It’s just that life could have been so much h easier.

Yes, I agree, I would be very reluctant to be medicated for ADHD or to have my choldren medicated, but over the years I have developed various strategies to cope with the problems ADHD can cause and I think far more effort should be put into helping children live with their diversity, sttrengthen their weaknesses and play to their strengths.

GrannyGravy13

We have neurodiverse family members, diagnoses, in most situations help navigate their school years.

In our experience there are still senior school teachers who either have little knowledge, experience or emotional maturity when dealing with neurodivergent students.

I can relate to the teachers.
When my grandson was about 5 ( in 2011) we realised something was wrong. His reaction to extreme unexpected noise, smells which was very upsetting to witness.
At this time there was no information on uk sites only info from America where it had a name: sensory deprivation disorder.
We found a private clinic where he was diagnosed with the condition.
Then me and my daughter had to explain it to his teacher.
I’ll never forget her face: she actually rolled her eyes at us 😡

winterwhite

But is there not in any case an increase in neurodiversity that deserves examination? I can't recall anyone being thought odder or weirder than anyone else when I was a child/at school.

You weren't at school with me, then!

I’m from a family with a number of neuro diverse individuals,
Its good to see adhd, ASD , dyslexia and more recognised,

M0nica

dogsmother

I’d love to have been recognised when a child as ADHD. I was never particularly naughty or slow to learn in fact probably smart passing 11+. But impulsive, sidetracked easily in fact so many relative things. I’m aware that now it’s linked with being double jointed, migraine and so much more.
I don’t want meds now however but I do recognise I need help sometimes. But luckily have a wonderful partner who gets me.
It’s just that life could have been so much h easier.

Yes, I agree, I would be very reluctant to be medicated for ADHD or to have my choldren medicated, but over the years I have developed various strategies to cope with the problems ADHD can cause and I think far more effort should be put into helping children live with their diversity, sttrengthen their weaknesses and play to their strengths.

I'm content I wasn't medicated when I was young.

My much younger brother was medicated for some exams (far after University). He disliked the feelings caused by the tablets, but he persevered, did well on his exams.