Is it always a good thing to be diagnosed with something?

I have tremors in my hands and pressed wrong button..

He had my blood taken and sent to Cardiff to have my whole genome genetically tested. Because of Covid he wasn't sent the results until March 2022.. I found out on the 1st April I was born with a rare hereditary neurological condition I was my neurologists first patient to have it and non of his colleagues at the hospital had a patient with it.

After blood tests my GP had done and showed heart failure I was sent to a cardiologist in 2020 . And found out I was born with a hole on my heart and I have Paroxysmal atrial fibrillation.

I was put in touch with a closed Facebook page for people with my condition and finally my live makes sense. I know understand why my body has done and does now . And understand why I have had to do things a certain way. I am 65 .

My fit healthy husband got cancer and died in 2004 aged 47. Because of his attitude of we alter our life to suit what you can do our children had a normal childhood and my grandson's understand nannie is disabled.

My GP in 1988 told me I was and Professor Marsden did to in 1992. But I was unable to get any disability benefits as I was always turned down because I was told I had no diagnosis.

This year I finally got PIP but only after the Brain Charity got me a solicitor pro bono after I was turned down in April 2022. I asked for the PIP forms in March 2022. Finally had my tribunal August this year and was awarded enhanced living and enhanced mobility indefinitely and back dated until March last year. Because the tribunal is a court with a judge it can never be taken off me..

I was born with 2 things in 1958.. It's taken me a long time to get my diagnosis and very glad I have . I was born disabled. And spread the word about hereditary Hyperekplexia because the Facebook group I belong to is world wide and there are 975 members . Top neurologist at the neurological hospital in London only had 20 patients with it.

Only wish my husband had lived long enough to know I have HPX.. Because of him I live a full life. He was my rock and the love of my life the other half of me. And I grieve everyday for him and always will do.

If your GD is diagnosed as neurodivergant and given a "label" this won't be a disadvantage, instead it will mean she get's the help she will need to lead a happy and productive life.

Freya5

Baggs

Dyslexia, dyspraxia, ADHD and other expressions are an improvement on slow, lazy, clumsy, stupid.

The 'labels' can also result in getting the labelled person more help.

What's not to like?

The labels, surely, should not be used without having a definitive diagnosis. Otherwise you are labelling people, and children with something they probably haven't got.
By the way, you cannot coerce any good Dr into giving a diagnosis just because it is wanted by a parent.

Yes, a proper diagnosis is needed.

I also think that Covid, lockdowns and schooling by video link has had profound effects on some children who may still be suffering the after-effects of social anxiety, falling behind in some subjects, isolation and the shifting of social groups.

Having Covid, too, affected some who are suffering not just some physical effects but "brain fog"from which they will, hopefully, recover but a degree of patience and understanding is needed.

DaisyL, I think in your natural worry about this, you're looking at it from the wrong end.
Any child who self-harms should be referred for help (you don't say if this happened to yours, and I'm glad they're fine now). Once referred, they will be assessed, hopefully helped, and there may or may not be a diagnosis.
So at the moment, I would concentrate on the help that the family are receiving (or possibly not).
A diagnosis can only be made by a psychiatrist, and in certain situations, some psychologists. Some experienced teachers & nurses may help with the assessment, and be quite skilled at spotting the traits that indicate certain conditions, but they can't 'diagnose'. In her worry, your DiL may be using such terms in a general way, but I think you all need to concentrate on the child, and the help they need.
I hope this helps - ignore if not!

DaisyL I am trying to keep calm and not get upset.

It is unfortunate that being neuro-diverse is currently fashionable, but coming from a family with a history of neuro-diversity, I can assure you that dyspraxia is so much more than not tying shoe laces and dyslexia is a lot more than just being a slow reader. What is your definition of a slow reader? A close friend's son, still struggles to read at 50. He, his brother, his mother and her grandchildren are all dyslexic and would love to know that thay are just slow readers and will get there one day.

I have dyspraxia and ADHD, diagnosed long before the current recognition of the significancs of these problems, so does DS. DGS only has ADHD.

My DGS's needs have been recognised at secondary school, so he gets the minor adjustments, which in his case are all that are necessary.

But both DS and I can talk at length about the difficulties we had at school, the feelings of alienation we had from other children, the feeling that you were different. Always in trouble because our work was so messy, or we lost concetration. I was considered an odd and difficult child, by other chldren as well as adults.

DaisyL Think back over your life, before neurally diverse people were recognised, think of all those 'odd', 'difficult' and 'weird' people you knew. The chances are that all of them were neurally diverse. So much more than being 'unable to tie shoe laces' and being a 'slow reader'.

My son hates the term 'neurodiverse' - he has disabilities but accepts that.

MOnica before my diagnosis last year I had always thought I was weird and no one in the family had the problems I had. I felt alone . My poor dad always blamed himself he thought because he had Dengue fever in the army in Asia he had past something on to me. I always told it wasn't him but me. My brother is 16 months younger than me and hasn't got HPX. The gene mutation I have means both my parents where carriers and had a 50/50 chance of having a child with HPX . There are 3 GL mutations if one or both parents have it then there children will get it and there children it's runs through families. There is no cure as it's in our DNA.

My late father in law told me to my face I was defective .

It's only been about 10 years or more it can be tested for genetically . Before but was by observation but only if the neurologist had other patients with it.

It's very lonely and frightening when you have something wrong with you and no one believes you it wasn't until I got married and had a new GP he tried to help. As I have said 1988 things altered and got worse but having hospital Drs calling you names is horrid. If I hadn't been so ill and in so much pain we would have taken things further. But we had the children to bring up.

I am sorry people have dismissed you and your family and like me from the sound of it school was hell not just for you but your son. Bullying from kids was bad enough but some of the teachers where bullies. Luckily they didn't bully me but did " normal" kids. I put it like that as there is no such thing as normal.

When I had my diagnosis last year it was such a relief as I had a name and finding others with it I am no longer alone . But there are also members in our group who didn't get diagnosed until 70 is the oldest but lot in 60's and 50's. But thankfully babies can get diagnosed from birth.

Parents posted videos of what there babies do and it broke my heart to think my parents when through that with me . And all they where told it was growing pains and I was clumsy. Some babies have to be on a feeding tube for a year. Only thing my parents said mom fed me for 3 months. Parents on the site talk about how hard it is to get their children to eat up age 8-9. Looking at photos of me I was very skinny compared to my brother. I now understand why my parents didn't stop me over eating they where just glad I was putting on weight. Unfortunately I turned into a obese adult . But I look on the bright side because of all fat I never broke a bone.

I have friends who's children are autistic but it took them 5+ years to get a diagnosis and then they could get the help they needed for their children at school and it made a difference to their lives.

Being physically or mentally disabled or both isn't something shameful but there are still ignorant people who think it is. What they don't realise is anyone at any point in their live can become physically or mentally ill or both .

Ignorance is not bliss but just ignorance .

And yes after my husband died because of my waking and limb jerks I have abuse shouted at me in the street but inthe early days of widowhood I never said anything back as I was widowed at 45. But I quickly learnt to fight back and belittle people who tried to make me feel like those bullies at school.

As others have said having a diagnosis or label can open doors that otherwise where closed. I had to fight for 35 years to finally get disability benefits. I would hate for anyone go through the hell I went through with my husband by my side and after he died.

In this day and age you would think people wouldn't discriminated against any disability. But they do and the worst offends are the very people who should help the DWP.

MOnica you must have come across some awful treatment of your conditions . I hope you are getting all the help you and your family need. There is the Brain Charity it's based in Liverpool but they help people all over the country have a look at their site and contact them if you feel able to and they will help you in anyway you need.

I think there is tendency to label conditions unnecessarily and use such labels as excuses. However, if children are helped during early education by a label of (say) ADD, so be it.

I've ADD and did well without any educational 'help', but some children may not have understanding teachers saying 'Norah, hush and pay attention' -- perhaps some are truly helped by labels?

My own experience is that they don't over diagnose and in fact MerylStreep's experience is much more common

Thank you to Whiff, MOnica and others who have been so honest about difficulties they have, and do face. I am hopeful that as knowledge and diagnosis of previouly poorly understood conditions increases, prejudice will diminish.
It can certainly feel very isolating to be “different” but I hope as my GD grows up she will suffer less discrimination than others have had to endure. Differences are to be celebrated.

Lets be clear, if you had cancer you would want a diagnosis, whether it led to you being labelled or not.

Being neuro-diverse is no difference, you need a diagnosis. Whether it is cancer or adhd, when you have a diagnosis, you can start dealing with the problem. Once I knew what my problems were, I could understand them. In many cases I had recognised individual problems and found ways of coping. Understanding them meant I could refine my adjustments and also explain my problems.

What does worry me is that we now live in an age of victimhood. The papers are full of people who have suffered various difficulties in life, some quite mild, wailing that their lives have been destroyed because, for example, their GCSE or A level marks are not high enough for their planned future, No they aen't, their plans have been knocked off course a bit, they may need to do resits, or study something else.

This is where 'labelling' is a problem. I saw my diagnosese as a way forward, something enabling, that made sense of my life and myself and explained why I find smart phones so difficult to use. I am not stupid, or elderly (well I am), but that I have dyspraxia and that young people with dysparaxia also have problems.

Too often these days these diagnoses seem to be seen as an excuse for making no effort to learn to manage one's problems but an excuse to give up and whine.

Not everyone is as well grounded as you appear to be MOnica. Some, for various reasons find life more difficult than others. I try not to be judgemental.

Frazanah I absolutely agree some people feel things more than others, but the tendency to claim victimhood is so widely used these days that I think it spreads far wider than that..

I had medical problems as a child as well as neuro diversity. The medical problems made me subject to what would now be considered quite vicious bullying. I had a choice, I could make life even worse for myself by collapsing in a heap or I could choose the easy way out by gritting my teeth and finding a way to deal with the bullying. I did and it worked.

I am a great believer in not making life harder for myself than is absolutely necessary.

The papers are full of people who have suffered various difficulties in life, some quite mild, wailing that their lives have been destroyed because, for example, their GCSE or A level marks are not high enough for their planned future, No they aen't, their plans have been knocked off course a bit, they may need to do resits, or study something else

Well look what happened with Hitler because he was twice rejected to study art in Vienna!

I would also like to pick up this idea that a diagnosis of neural diversity damages and limits you opportunities in adult life.

DS, he with dyspraxia and ADHD, is a university professor, well-known enough to turn up in the media at regular intervals as his projects progress. Without his diagnosis of dyspraxia, the cause of his writing problems might never have been diagnosed. The physiotherapy he had as a result, meant he was able to fufill his capabilities to get good O & A levels.

I went to university and got two higher degrees, had a successful career in industry.

Murally diverse people are often highly creative and, I understand that the number of people in the creative industries with dyslexia is well above average

The proportion of people with autism working in science and engineering is higher than average and it is particularly high in IT. 15 of the 30 people named in this link are scientists orin related subjects and include Nicholas Tesla and Charles Darwin
www.appliedbehavioranalysisprograms.com/historys-30-most-inspiring-people-on-the-autism-spectrum/ . Neural diversiy being diagnosed is not going to be any limitation to future success.

I don’t know if anyone heard the Today programme this morning. Jason Arday, youngest black professor at Cambridge was guest presenter, and his story is remarkable.
He certainly didn’t let neurodiversity stand in his way. He didn’t speak until he was 11, and learned to read and write at 18!

I, or rather my house, is definitely murally diverse 😊

I think there is quite a divide between adults with autism who are able to hold professional jobs etc and parents of some children with autism who will never be able to use language or live independently. They are often served by the same organisations and in my view their needs and views are very different.

I completely agree Galaxy.

Autism is a bit of an umbrella

People can be very diverse underneath it and struggle with different components to different degrees

My natural social awareness is terrible but I have learned... I am hyper aware to people's facial expressions and non verbal language now and notice things others would not. Socially I do ok, less ok in type

I have sadly, a lot of anxiety and that comes with images of what the worst is that could happen in a given situation

Sensory issues aren't great... But I can tune out background noise, much to the frustration of people trying to talk to me lol. Cannot cope with repetitive noise at all. Hate crowds, strip lights etc

Have a few stims... They can be as diverse as the person too... My daughter for example, she ent through a phase of coughing as a stim. I did not know I had any until it was pointed out that I hand flap when stressed or move my fingers in repetitive ways.. or when someone asked me to PLEASE stop clicking the lid to my lipsil on and off in a meeting lol

MOnica
My functioning autistic daughter ( working in IT) adores Nicholas Tesla, so much so that she has visited his museum in the usa.
My daughter introduced me to this young man, Parker Edmunson we think he’s the re-incarnation of Tesla. The young man is a genius.

It will be good for my Mum to get diagnosed (with dementia) not because I want to label her but they she gets treatment that may give her a better/longer quality of life. We are 5 months into the process of getting that diagnosis..so nearly there...

PoppyFlower having your mom diagnosed with dementia will be a good thing and it will prepare you for wants to come.

My mom's GP diagnosed my mom with dementia. Mom had been getting forgetful and I did explain about her brain cells dieing and I said it will only get worse but I promised her I would always look after her. The last 18 months of her life I had her to live with me. As I was being called out all hours of the night and day I don't drive so had taxis and when I got there she had forgotten she had called me. So I told her I couldn't do it anymore and she had to live with me. She agreed but didn't want her house sold until she died . My brother and me agreed.

Life got harder . Mom had cancer as well but it was only the last 4 months that things got worse. PoppyFlower this may not happen to your mom but it does happen a lot . My mom became violent. But the violence is NOT malicious it's out of fear. Mom forgot who she was ,where she was,names of things and thought I was her mom . I used to say I am your daughter she would say I know mom I love you. Some person on one of the threads said it was abuse but that person makes out everything is abuse. Mom did have rare moments when she would talk about being a child. Mom loved flowers so always had them in her bedroom. Prior to the last 4 months I used to have mom downstairs after breakfast we had a commode for her. But one day I was taking her up to bed and she sat on the stairs and said she had broken her leg and wouldn't move. I had to send for my nephew. As soon as he came she said hello and got up and walked the rest of the way. But I couldn't risk it happening again so mom had to stay upstairs . She was sleeping more and could wake ok or attack me. I was frightened to hurt her until I could get the duvet to hold her until it was over. I carry the scars to this day. But I would do it all over again.

It's important that while you mom can do things she does them. I used to have to show and talk throug