does anybody on here have experience ofr regressive Autism ?

[SwissCheeseIsHolyCheesus]

My Nephew aged 8 seems to be going backwards and nothing we try is helping

He literally had more skills as a 3yr old than he does now and it's getting worse

His hands are curling in, he's finding it difficult to use thm

Hes lost all speech, no longer sings

His feet are starting to turn in, constantly falls over etc

dribbles all the time

is constantly unsettled, pacing with no real meaning / pattern

Dosent respond to verbal instructions at all or pecs which he used to use but he does look when we say his name

there are other issues too, dsis has had him at docs etc who don't seem to think there is a problem

I say if a nt child started having problems like this things would be done !

You are right. your sister needs to make noise. Complain and fight. Your nephew needs medical investigation as well as a re-examination of his support and any therapies he may be having. Does your sister do anything along sonrise / aba /anything in between lines?

Done it all.

D sis has it hard as her dd also has severe Autism, epilepsy etc

I do try to help where I can but it's hard as my own two are also autistic.

paediatrician does seem to be dismissive of her and have tld dsis I will be going to his next appt with her AND I WILL SHOUT if needed, this sort of 'leave it and see attitude is not on.

I seriously havent seen anything like this before, his decline has been gradual and I got a shock after not seeing him for a few weeks, I came home in tears tbh

Also, dn no longe gets any therapies etc, hes 8 now, attends a special needs school and gets 4hrs respite per week, thats it.

Shes a single parent, both children need two carers each when they go out as one adult can't manage

So how the hell is she supposed to cope on her own ?

And no doubt if one of them were to get injured under her care, ss would be down on her like a ton of bricks !

Ask for their formal complaints procedure. Let them know you are taking this as far as you have to.

Mine both have autism. Both gluten intolerant (see my profile for full list of troubles )

ds2 stopped growing. Same shoe size for about 3 years! I tried everything, but nobody would listen to me. In the end, we were forcefeeding him complain, while he looked like a skeleton and was half starving to death! no energy, sitting on sofa, flopped and crying... it was awful.

Finally, my husband went to gp and fell out with her! She tried to say our son was in proportion, totally ignoring the fact that he may be in proportion, but they were the same proportions he'd been in for 3 years!

Anyway, he really laid into her and she agreed to blood tests, just I think to shut us up. Anyway, found my son was badly anaemic. Long term problem. He was put on iron and within no time was a normal, healthy, energetic boy.

Anyway, my point is that if you have to fall out with them , then fall out with them. Threaten them with complaints procedure. Tell them that they are failing and say that if you have to go down the private route, and something is wrong, you'll be setting your solicitor on them!

I think she'll have to.

Your son sounds just like my nephew, he does eat tho but looks like something out of belsen.

Her dd has adhd, epilepsy and autism, shes alo non verbal and has mannnnnnyyyyyyyyy food intolerences.

Her ds so far has been diagnosed with adhd, autism, tourettes and epilepsy, he's also non verbal and I think there i a massive underlying problem tbh.

It's ridiculous having to fight, they were even reluctant to diagnose her dds epilepsy at first

And now i'm dying to know what happened at Cleethorpes ??

Hi Swiss

a few q's

Did he have a dx of asd before 3? if not then I would be asking for emergency help as there is another regeressive disoreder- actually for a post 3 regression I would be anyway. There;s something called childhood disintegrative disorder they need to look at if he has regressed so far aand if it were me I wouild be banging doors down right now.

He was diagnosed around 2/3, his autism was fairly obvious far earlier tbh.

I agree, if he were mine I would not stop until I had an answer but dsis does tend to favour the ostitch approach and I can see why at times.

He gets seen once a yr and thats it, if he were my son I would be demanding he at least see a neurologist but he isnt so all I can do is shout at a sodding brick wall

Hmm

Well ds3 has regressions and always did up until fairly recently but never to that extgent and the Paeds I know who specilaise at the tertiary clinic say any further regression need investigation.

CDD is a really severe problem that she needs to get ruled out as it can be cuased by other syndromes such as tunberoud schlerosis. Like many rare disoreders the chances are A) that it isn't, and B) that her GP has not encountered it and won't see the difference between it and ASD straight.

It's the physical changes that concern me, it literally looks like he's curling in on himself, I've know a lot of children with autism and other sens and have seen children regress (including my own) but never to this extent.

I'm seeing her tmw and i'm going to have to get nasty, grow a backbone and get this sorted out.

Harsh I know but it's only because I care and don't know what else to do.

I think you have to Swiss, I remember the Psych here telling me about CDD and that teh children find it distressing so that could cause duroling inwards foetal-style eprhaps? But GP's often assume anything si ASD and it can be ahrd to make them relaise that a child with ASD is as vulnerable to other conditions as any other child and needs a full health screen for worrying symptoms.

swiss - ds2 has delayed echolalia and verbal and physical tics.

He's done "Clifford the big red dog and tasty food, now at mcdonalds." he's done "that's asda price" he's done "Bum chikka wow wow" (when I saw that ad on tv for the first time, my heart sank cos I knew both of them would latch onto it!) he's done "two" he's done all manner of gurning and grunting.

He chose Cleethorpes to do "naked" "I'm naked" "I'm naked. Naked" "Help. I'm naked."

Now he's doing "shit" and "ngug"

Re the kick up the arse, you have to. She has to give herself a slap and snap out of it and work hard to do what's right by her son. And sometimes that means fighting and making yourself bloody unpopular!

and just noticed I said we were forcefeeding him complain. Obv I meant complan. We weren't shoving our daily moans down his throat

My ds has delayed echolalia too !!

Omfg, at the moment it's 'aldi, spend a little, live a lot'

We've had, raspberry, raspberry

moooooooooonpig.com ( seriously, if the creators of that ad disappear under suspicious circumstances i know nuffink )

safestyle uk, you buy one, you get one free, I say you buy one, you get one free

Ping

Mushroom

And once, rather famously might I add, 'sexual assault' He'd heard it on the radio news.

For some reason he also likes to record himself saying his phrases and playing them back

He has a few twitches but thats more dds forte, oooh god, Don't even get me started on dd !

Oh God yes, Moon bloody pig- ds3 was stuck on that for ages.

DS1 was snip snip bird (from 64 zoo lane); it was repeated the otehr day and I almost caused loss of life in my haste to the remote control before he cmae in!

We've also had 'robnot robot duh duh dummmm', 'chickeeeeeeeen' and now ds1 when stressed uses a horrid guinea pig noise that no otehr human can actually make.

oh yes, mine have a dictaphone. Drives me bloody NUTS!

Mine also did the log on noise that windows makes - BEEEEEE-ba-ba-ba-baa. That was annoying.

Have you ever watched or heard something and you just knew it was going to be the next thing? You think oh bollocks. I did with the bum chikka wow wow and one that I think was for sweets, where a couple of - fairly freaky - kids were making some bloody odd faces. I saw it and thought, oh no.

All the phrases, noises, flapping and gurning...You've got to laugh, haven't you?

Swisscheese - Your sister's children and your children are all autistic? Is it genetic then do you think? I am convinced my boys' autism has a genetic cause. I see traits in many members of my family, myself included.

God yeah, if my dsis isnt autistic I will eat my own eyeball and I see definite traits in myself, I don't just coincidence that hers are more severe either, she dosent really interact herself and the fact they were probably quite severe by nature and then their environment ie nurture , resulting in two children with a lot of problems.

My ds gets a certain 'look' on his face when something catches his eye, my heart sinks and I mutter an expletive, I can spot an obsession brewing from 1000 paces nowadays

Ds also makes these awful screeching/ whistley/ roaring noises, they make my ears bleed, dd does the guinea pig stuck in a hoover noise too so I feel your pain

Just had a panicked phonecall off dp, sounds like 'i'll smack your arse back one of these days' is going to be next phrase

Oh yes they can, Clarissimo - both of my boys imitate the guinea pigs in the foundation unit at school!!! It's earsplitting.

Oh yes, I know that noise! Makes your ears bleed!

I swear sometimes I thought my windows were going to shatter

Thankfully it's not a noise they really make any more

DS1 can go days at school making nothing ohter than that noise.

He wants to meet any kids on here who can do it and marry any that may be female PMSL.

He is guinea pig obsessed- cried for hours even though he's 10 when we said no to one of those battery operated ones in Tesco. DS3 is club penguin obsessed- far easier (well it is now DH has a second hand laptop for work otherwise he was trying to work with ds3 constantly there begging for PC)

Clarissimo, I have a wifey here waiting, you are more than welcome to take dd off my hand and they can be together in squeaky harmony .

My dd isnt guinea pig obsessed tho, just obsessed with irritating me !

Gotta laugh to, i'd love to have their view of the world,it's so simplistic, they really don't care what people think