My son: I have spent the morning in... - Fibromyalgia Acti...

Fibromyalgia Action UK

59,449 members66,495 posts

My son

dizzylynn profile image
16 Replies

I have spent the morning in tears, my oldest son was diagnosed with autism about 8-10 years ago. So went to find out why his file was closed by the shrink, the bleeeeeeeeep discharged him said he was no longer autistic, the gp argued with me adults don't have ADHD or need meds so she's stoping them as he can't get them unless under the psychology department. I broke down in town centre, Craig Connors support worker picked him up told him what gp said, hes baffled at how they can say this. WITHOUT even seeing him. Ive called his old school to get the letters out of the archives, they can't believe what this man has done, their making copies of everything stating Connor has autism from more than one professional. I have been in a mess cause of this, she even argued I'm the only adult on ADHD meds, said this to my Dr today, he replied I can assure you there are plenty on meds its NOT age related. Managed to move him to my new Dr with us hubby noticed list was only closed to new patients coming into town. So will get an appointment for Friday telling them what's happened. Just can't believe they kicked the world out from under him never mind falling through the cracks.

Written by
dizzylynn profile image
dizzylynn
To view profiles and participate in discussions please or .
Read more about...
16 Replies
Lou1062 profile image
Lou1062

This is outrageous, it isn't safe to just stop the medication he is taking, this is not age related I can assure you, write everything down make sure you have all the info as its easy to overlook things. I know from experience when you have a child with a disability that even as an adult you still have to fight their corner every step of the way. I also suggest that you consider complaining to PALS especially if you get no joy from the new GP. All best wishes to you and your family. Lou xx

ukmsmi4 profile image
ukmsmi4

Hi

Got to admit (to my shame) I don't know a lot about ADHD but I do know two of my nephews were diagnosed with it as children, both are over 25 now and I know for a fact one of them is still on meds. Wouldn't surprise me if the other one was too.

So even I with my limited knowledge can confirm that is a load of baloney. I don't know what is going on in the medical profession these days but sadly it seems like this sort of story is all too common these days. It seems care for the sick, disabled and vulnerable these days has nothing whatsoever do to with their needs and all too much to do with budgets. Perhaps it's not surprising given the stranglehold the psychobabble gang have on the profession and government medical departments these days coupled with their connections with insurance firms. Or am just being cynical . . . ?

When you can get yourself back on your feet I hope you can take them on again and not let them get away with such a poor standard of care.

Gentle hugs.

Margaret.xx

GothBird profile image
GothBird

I really do feel for u as my son has ADHD an it took me 11 years to get him diagnosed. An he is now 20 years old an has adult ADHD an split personality disorder. U need to get a second opinion. An to say adults dnt get ADHD is rubbish. Sum kids do grow out of it bt sum dnt. My sons has gone worse. I'm son that bad I had to have him arrested an kick him out an that was the hardest thing I've had to do. Bt plz plz push to get another opinion. Try keep smiling good luck xx

Regnofibro1 profile image
Regnofibro1

See I don't understand that. ADHD doesn't just shut off because you turn 18 !! I feel for you I have 1 grandson with deslixia ( like me), 1 with ADHD ( like my daughter his mom) , 1 with mild autism (son in law son) . They keep me moving and everyone else too. I just don't get how they could just drop him. That's medical malpractice as far as I am concerned! Ooo some doctors make me so mad I could spit!

dizzylynn profile image
dizzylynn in reply to Regnofibro1

Some of the ADHD traits change or lesson when you hit your 20s the part of the brain that controls impulses matures by then, but your concentration doesn't change, you still need help to focus etc. The autism doesn't go away you just manage it better by then, to say a patient is NOT on the spectrum after years of work from (12 to be exact) another Dr without even seeing him is malpractice, I am going to new gp once records are there. My main worry is his dla, he has now been put to the pip change, I have to figure out how to get evidence without the need for the adult psychology department imput, unless gp supports Dr greenshaws original findings, the bleeeep wouldn't even look back in my sons file for all the reports from previous Dr, she looked at Dr dewars & said hes not autistic, lost head at her, especially after she said adults dont take ADHD meds, yes they do cos I've been on thrm 9 years, her reply then your the only 1 in Scotland.

TheAuthor profile image
TheAuthor

I am so genuinely sorry to read this and I want to sincerely wish both of your all the best of luck.

All my hopes and dreams for you

Ken

dennydee profile image
dennydee

I really feel for you.My son was thirty years old before he was told that he has Aspergers and ADHD.This was after seeing several Doctors for many years.Hope all goes well for you and your family.Keep on fighting .Denise xx

ailsamary profile image
ailsamary

I am so sorry you have been failed so dramatically. The only thing I can possibly think of is that, whilst these disorders have been around for a long time it is only in more recent years that people are getting proper diagnosis. When I was not long out of college many children were still being said just to be naughty and that this 'was just an excuse '. Fortunately, or rather hopefully people are much more aware. Having said that I don't really remember being aware of ADHD being a diagnosis with adults.- again it would have been all put under the heading of behavioural problems.

Now of course WE are all well aware that this is all wrong it unfortunately doesn't necessarily mean that the Dr's necessarily know better. Unfortunately there is no guarantee that a GP will have read about any advances or even better attended a new course.

Whilst I know targets are such a nightmare nowadays I'm not sure that there is less care. In previous times people rarely questioned what they were told. And our expectations are so much higher nowadays. I remember a great aunt telling me about when she was a nurse in the 1950's and you wouldn't get away with now, some of the things that happened then. I remember training in the 1980"s you weren't allowed to talk to patients, except small talk when you were making a bed or such like. The consultant talked over the patient rather than too them. And of course there was an awful lot less diagnostics than there are now. I don't mean any of this in a bad way but just trying to put things into some sort of perspective.

dizzylynn profile image
dizzylynn in reply to ailsamary

That was excuse she used, they done tests on him theres more tests bow , eh no they didn't they haven't even seen him.

ailsamary profile image
ailsamary in reply to dizzylynn

Agreed, whilst most brain conditions are hard to diagnose it's still mainly looking at the symptoms and seeing what it matches best, you still need to actually see the person - several times I would have thought to be able to get a proper pattern. I am so sorry, she has lied, and that is unacceptable

dizzylynn profile image
dizzylynn

I think this idiot government has forced Drs to dismiss higher functioned autism to cut numbers down and care needed, so only ones they will help are the none functioning autism patients, leaving the rest to fend for themselves or the burden on the parents, I have seen many cases of parents having to send them away or dump them on the street cos there is just no help, they cant go out to work and cant afford the charges for support care so there hands are tied. There was a friend of a friend who's downs daughter was cured, the gp actually wrote the downs was cured, and they accepted that she lost everything, other person had no legs or arms, gp said he couldd walk & take care of himself, they lost their car and all the support, its stupid common sense these things don't go away

Hi you can always report them to the GMC if you think not doing there job properly they don't always do something now but it lays on file so if others bring it up then have to act etc so please do ring them and explain.

they can also oversee what there doing to check it's carried out right.

Being someone that today is having my first appointment at an autism place something had since young and finding out more as i go and yes it does effect many things.

dizzylynn profile image
dizzylynn in reply to

Both my boys are underr the spectrum just in different ways & levels. My daughter even has the markers, but girls are missed or over looked because they aren't as aggressive. My daughter is 15 but acts and relates to a child of about 5-7 years old. She struggles socially & we can't let her out she wonders and has no sence of time or direction.

in reply to

Hi well they asked me many questions(brains steaming!)but so much he said to deal with made me another appointment today didn't give me any electric shocks/sit in chair think thats next week lol.

Doing i guess the base work to see where i am.

Explained or tried to many of the things going on like get very frustrated with things no patience with things like my own space find can't concentrate on things as used to love reading but rarely do now apart from short things but since had collapse problem while back it's started

But did say built my own car rewired it fully changed it to fuel injection polished and ported the head with performance cam modded F injection and lots of others things.

Can do more or less any building work.Tree work drop a tree where ever i need it to go.Electrical.Build my own PC's and mod cases with water cooling etc.Photography.Navigation as ive my own in built tom tom could find anywhere even at 16 odd and many places never been to before!

Much self taught like slot the required disc in and away i go?

Learn't roping and sheeting lorries in 5 mins old boy showed me once how to tie dolly knot and never forgot got me jobs though being able to do as many newer drivers never know how to.

Went to Rochdale years back never been there to that part in my life was there 5 mins and found place like a 2nd sense mm think need turn here and mm round there wallah that's it.

so we have skills other can't get but does have other problems for you.

Scouser58 profile image
Scouser58

That shrink must be in need of a long holiday,,,,No longer autistic,?? silly me I thought you were diagnosed for life,,,have they made a tablet that cures it??

I hope now that your new GP is on the case, things will get sorted out and maybe a second shrink may be referred for him.

Have you considered making a formal complaint?? I would if somebody behaved like that towards me and mine,

I hope you have some rest and start to feel positive again, ttfn from Karen.

One ironic thing was council turned me down for blue badge said only scored 9 out of 25 not sure where get rest or get other 16 unless crawl there on your back?

Rang them said not just for now but rest of the day or burnt out if do too much said about Autism to as under service they said if are you can apply for Freedom pass!

Talking to friend laughed said that will cost them way far more than blue badge and A guy said they just don't seem to think things through properly when said about it!.

You may also like...

Fm and explaining to my young son

afterwards. I feel like I am letting them down as I am only 30 and can't find an easy way to...

Worried Mother, son with Fibro

for him but he pushes himself for the sake of his son. It really hurts me as a mother to see him...

Help for my 31 year old son please. First post.

He has symptoms of Fibromyalgia and his GP is close to giving him the diagnosis but could there be...

All my son can say is Judiths Mam this Judiths Mam that.

could cause a massive flare. so am trying not to use them much ,although I think i must try and...

24 year old son in need of help