call me jaded

Baddad I am talking about the diagnostic process that we went through for autism, as it was in the late 90s, early 2000s. We had to go through a series of NHS waiting lists, starting with hearing tests and culminating in EEGs and MRIs. We had a child who couldn't walk and couldn't talk at three and a half. The neurologist warned us that it was a case of finding something but he couldn't say what, but not to rule out a tumour. He was just walking by the time he had the MRI and the scan showed up a cyst ( a Dandy Walker cyst) that was part of the reason he had problems but absolutely not the end of it. They couldn't tell what the prognosis was because they didn't know what his condition was. By this time he was in his special school and we had no reason to seek a further label and besides the next diagnostic step offered was three days at what's now the Lorna Wing Centre but we were all diagnosed-out by then and said we couldn't take any more. Roll on a few more years and a transfer to secondary was beginning to worry me so we went back and asked for an ASD assessment. By this time things had moved to multi-disciplinary assessment and everybody had had their training so it was a simple CARS with the clinical psych and a chat with the paed and a confirmation by letter. That is a fairly common diagnostic route for children of my son's age who are on the severe end of the spectrum. Some got there quicker than us, some didn't get there at all and stopped at the 'global developmental delay' stage.

Okaaay. Let's not get into a debate about whose life is the more harrowing, because obviously it's yours and I have been extremely lucky. I still count breaking into a sweat to hold down a child who'd turned into an eel and was screaming primeavally whilst the anestheatist did his stuff (whilst apologising about how badly it was going) and then watching him go off to have a scan that you'd been told might reveal a brain tumour pretty harrowing. Call me lucky.

Fantastic to have your hard work recognised! Well done

Yes I agree there can be 'learned helplessness' if there's always going to be someone there to pick up the pieces. You get to a point where you accept that or walk away. As a family we do it to support the mother who is now getting on a bit and who we really can't leave to get on with it as she was being taken advantage of quite outrageously. The thing is to step back emotionally if you can. Very difficult I know.

Having a son who has had an MRI, the only way it was achieved was by giving him a GA. Restraining him so they could get the needle in and then seeing his tiny motionless body wheeled away on the trolley is one of the most harrowing memories I have. I would make the same point as Charlotte Moore about the difficulty of expecting a child to just submit to the procedure. Having also been through battery after battery of testing to be told the results were 'normal' when clearly everything was not normal I think parents are not generally seeking validation of their preconceptions, but seeking some answers. I didn't appreciate the strain of living without a diagnosis until it was removed. Every 'results' consultation we went to up to that point we were bracing ourselves to hear whether his condition was terminal. Autism was a relief. He was nine years old. Anything to speed up the process is welcome. 90% (and hopefully more) getting an accurate diagnosis is something to be celebrated. The focus on weeding out of 'false claims' seems bizarre TBH.

You have to be able to isolate all new plumbing and they normally use those things that you see on washing machine connections that you turn a quarter turn to switch on or turn off. Can you locate something like that for the taps you need to turn off? It would depend on him not seeing you do it for it to work, but it has worked very successfully for our shower - the other kids even know how to turn it back on.

Maybe things have moved on (I'm sure they have), but the STEER published in 2004 couldn't find much in the way of rigorous research to support CBT. Anybody got anything more current? What do NICE say?

I have a family member with mental health issues and long term cannabis use who has dipped in and out of crisis despite a tonne of help and support from many family members - can't tell you how many times we've all got together to bail him out. His mother has said to me so many times that she hopes that this time he'll sort himself out. And yet he doesn't, ever. I'm not sure that there is much more that you can be doing other than be there to pick up the pieces. There doesn't seem any preventative agencies out there. I did some work for what was then the Healthcare Commission around people in supported housing. There seems to be a cycle of sinking into debt, being close to being made homeless, having some kind of breakdown and being admitted to hospital, then being put into supported housing again. Very depressing stuff that has stayed with me. I'm not sure what help there is out there. It's all gate kept by some very tight access criteria so that you really do have to be at rock bottom. You have my sympathies.

Are they not just identifying the commonalities? The same differences that tick all the behavioural boxes, show on the MRIs?

Been mulling over all the 'what if's here for some time due to the geneticist thinking she'd found something that fitted DS which would mean he doesn't have an ASD after all. No diagnostic conclusions yet and I am hesitating to pursue it without some kind of reassurance that his placement at his ASD-specific school would continue. We have decided not to 'risk' the school placement so pursuit of an accurate label will be delayed.

Wasn't there some research that said CBT may not be effective for people with autism?

Sounds OK to be honest. 'Likely to be developmental' to me = possible developmental delay, which is where an autism diagnosis would fit in paediatric terms. They're having you back too.

Loving the wide age ranges we're getting here! I'm only going to admit to being somewhere in the middle of you two. Welcome back macgumerait and a belated welcome to you too bluebudedog.

Hi there - welcome to the forum!

Helloooo! Good to see you

Happy birthday! Have a good one!

Happy birthday! Doing anything?

Hoping for the best for you all.

You're best bet of finding out is Hansard. I seem to recall that the cost of appeal to the parent averaged at £5,000. That was maybe in the Bercow report, but certainly evidence given to the Commons Education Select Committee that was chaired by Barry Sheerman (so maybe the Sheerman report). That was SENDIST in its old format, not SEND. I'm sure an accountant looking at the assertion that it was costing nothing would think otherwise. Perhaps you could phrase it in those terms if you can't find a figure.

Sounds great! Let's hope for tolerance all around

Here. They have discounted higher SES families gaining better access to diagnosis (ascertainment) by looking at those previously undiagnosed and still found a link. So they want to look at what factors (older parents, higher intelligence, cleanliness, etc) might be causing autism.

Were they big or small cats I wonder? 29 was a good year for me! I think I peaked then and it's been downhill ever since, lol.

Hope you're having a good one!

Yes we have a couple of secondaries with them and plans to open more. You need to check the criteria carefully. We have a primary S&L unit for children without ASD and about 5 for those with. Your parent partnership service should be able to guide you on what's available locally.

Those bloomin' leather seats, ehh. Jacket on, jacket off... I keep saying it. My littlest one can just do the attitude though.