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NHS Diagnosis of ASD

54 replies

OhToBeABuddha · 31/01/2012 12:33

My DS 2.5 is about to have an assessment for ASD. I would love to hear your views on whether you think a diagnosis is useful or not and why.

My DS has been delayed but has made significant progress using a Verbal Behaviour Approach since we started 4 months ago, he has just started to speak.

The NHS don't have the resources to help him, so I'm in two minds about whether a diagnosis will benefit him, bearing in mind, you don't need an official DX to get a statement.

So what does he need an official DX for? It's just a label isn't it? And a very broad non-specific one at that, which most people know nothing about.

I'm probably missing something here, so would love to hear your views.

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zzzzz · 31/01/2012 21:22

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LeninGrad · 31/01/2012 21:22

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OhToBeABuddha · 31/01/2012 21:23

Ok, I'll give an example, he has asd so he doesn't like social interaction... Complete rubbish as far as my ds is concerned. He has asd so he learns visually rather than receptively, again, complete rubbish. He has asd so he can't get past his dislike of playdoh... Again what a load of bollocks ... My Ds can do anything if he wants too. Problem is he is cautious due to eye problems and missing crucial development steps. He is delayed not necessarily significantly autistic.

Another one... He loves numbers, it must be a stim... Why? It's a good thing to like and it's not harmful... Sick of people telling me everything is does is due to asd. How about he just has a personality and is stubborn, like I was and my partner was. Granted... We don't know what he will be like in the future but I'm annoyed that everything he does had to be down to Asd. It's silly, you could have dx'd me at 3, but I have a masters, I had a brilliant job, I have a lovely partner and I just got over my anxieties because quite simply, no one expected otherwise.

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moosemama · 31/01/2012 21:29

I don't think having a dx will lead to your ds not being challenged. If anything it will help direct any support he might need to enable him to overcome potential barriers and achieve his potential.

There are people on this board who have dcs that are gifted and talented, yet still need social/communication/organisational/pastoral support to achieve their academic potential and navigate the educational system.

My own ds flew through infant school and came out of it with top level SATs, but hit the juniors and went into a steep decline - accompanied by a breakdown. Sad It was getting him assessed and dxd that enabled us to access the support he needed and finally - after two and a half years of hell, he is now back on track and wowing his teachers with what he is capable of achieving. If we hadn't got the dx, he would have ended up being pulled out of school and definitely wouldn't have been able to achieve his full potential, as we wouldn't have had the support we've had in learning to understand and support him.

For us, as I said, dx was the only way forward and if we'd pushed to get it sooner, ds would never have suffered the way he has for the past 2/3 years, but that's us and our ds. I understand what you are saying completely. Your ds is still so little and its so hard to see into the future and know what will and won't help. Ultimately you can only do what you feel is best, as his parent.

LeninGrad · 31/01/2012 21:29

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LeninGrad · 31/01/2012 21:32

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zzzzz · 31/01/2012 21:33

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Catsdontcare · 31/01/2012 21:33

No two children with ASD are the same just like any other child really. A dx can be as useful as you want it to be. Ds has one only a handful of friends know as it is not useful for all friends and family to know. To me it serves no benefit to tell them. All professionals/teachers know because it serves to get his needs met at school.

Ds is an individual with his own specific needs. We work to meet those needs not to address him just as a child with ASD. If an aspect of ASD isn't relevant to him we don't consider it

OhToBeABuddha · 31/01/2012 21:34

By the way, I am actively helping ds, he has therapy for 6 hours a day and he has proved he doesn't have many of the difficulties associated with Asd. I'm sorry if I am coming across badly. There was I time when I posted on this board and truely believed ds was severely autistic, so
I understand your commentheard where you are coming from but the verbal behaviour therapy has proved otherwise. I don't want to limit his potential because adults around him believe he is not capable.

Not sure if anyone saw the you tube video of the girl from canada... That's how I feel, don't want to ever underestimate his ability.

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LeninGrad · 31/01/2012 21:35

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OhToBeABuddha · 31/01/2012 21:38

Appreciate all your replies and agree a dx will help navigate the education system. I know you guys are right, but you all live with Asd and understand it. Guess I'm concerned with teachers etc who don't understand it . Have heard a lot of tripe in the last year about what a child with asd can do and cannot do. In my opinion, most professionals and people are ignorant and hence my worries. If the world was full of people like you guys, I would welcome a dx.

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OhToBeABuddha · 31/01/2012 21:40

Professionals, health visitor, salt, physio, fine motor, 2 paeds, people at SN play groups. It feels like it's everyone who doesn't know him.

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OhToBeABuddha · 31/01/2012 21:41

No one seems to listen to my opinion...

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LeninGrad · 31/01/2012 21:42

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OhToBeABuddha · 31/01/2012 21:43

Being assessed purely for asd.

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LeninGrad · 31/01/2012 21:45

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zzzzz · 31/01/2012 21:47

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nenevomito · 31/01/2012 21:50

My DS has High functioning autism and when it was first highlighted that some of his problems could be due to ASD, I felt like you did.

I had spent so many years accepting DS for how it was I just couldn't believe it was right. I mean, he was just intelligent and artistic, we had made mistakes with parenting and so on and so on. DS is still all of the things he was before - loving, caring, bright and artistic, but he still has ASD.

DS has an amazing vocabulary, writes amazing stories and has some skills above the level of kids in his class, but he still has ASD.

He finds touch problematic, gets stressed and anxious, would live in a blanket if he could. He hears voices, goes for ages without sleep and obsesses about dragons.

His diagnosis does not restrict what he does or stop his potential. It means that he gets the support and consideration he needs to be able to reach his potential. Without the understanding of his condition, he could be "labelled" in school as a weirdo, a loner and a naughty child. As it is, he is recgonised as a special child, with a unique way of looking at the world and the ability to do well.

Don't be scared of a diagnosis. Its a help, not a hinderance.

moosemama · 31/01/2012 21:51

As you said, you could have been dxd yourself at 3 and you have gone on to be successful and have a loving family. That's great and your ds may well follow in your footsteps, particularly as he has parents who are able to understand and support him.

Same story for my bil. The school wanted him assessed, fil physically ejected the EP from his house. Bil went on to suffer socially and in other ways through school, but came out of it with a Phd in a scientific subject, is happily married and has 3 lovely dcs. Yes, he did all that and he would still get a dx of AS now if he was assessed (he says this himself). His ds also has AS, but has been massively supported both at home and through school and bil has made sure that his ds own doesn't struggle the way he had to.

I agree, it is perfectly possible for some people to get through life without a dx, live life in their own way and be perfectly fulfilled and happy. The problem is, its so hard to know who will be like that and who will be like my ds, highly anxious and emotionally fragile and in need of a massive amount of support to achieve his potential. We thought ds was doing fine, right up until he crashed and then it seemed to explode out of nowhere and was one of the scariest and most distressing things I have ever been through. I will always feel guilty for not getting him properly supported sooner. We honestly thought he was doing fine, a bit quirky, stubborn and off the wall, but coping in spite of it all. Sad

I am very hopeful that my ds will go on to achieve whatever he wants to achieve and have a happy and fulfilled life, but in his case I now know that he can't achieve that without getting a lot of support through the next few years and in order to access that support he needs his dx.

It is probably more complicated for your ds because of his vision problems, but as someone said up the thread, you don't have to accept a dx at this point, even if one is suggested. They asked us whether or not we wanted the 'official dx' when ds was assessed.

Also, the thing about the assessment being in a relatively short space of time, in an unfamiliar place etc is sort of valid, but if your area is anything like ours, that is just the final piece in the puzzle rather than the whole assessment. If they have already seen your ds, you have given them a full history and completed the relevant checklists/questionnaires then it will all be taken into consideration, rather than a decision made just based on their observations over a two hour period. My ds's assessment involved 12 weeks working 1:1 with an EP, reports from the OT and ASD Inclusion Team who had been to observe him in school and both checklists/questionnaires and meetings with ourselves in order to gather as much information and history as possible. The actual ADOS assessment was really just the final link in the chain.

WarmAndFuzzy · 31/01/2012 21:59

I have to say I'm also not totally convinced about the labeling - I've got two boys who were referred by their school as soon as they hit reception, and to our complete surprise they were both given the 'label' of ASD, one with a bit of humming and ha-ing because the Paed wasn't too sure. They're both very bright and a bit obsessive, but they're both social, have friends, play reasonably well with other children (mostly). They're similar to a lot of other members of my family (including my husband) who have had very good lives without a diagnosis - good degrees at good universities, families etc.

Yes, they have educational needs (writing is a particular problem, and attention isn't great if they're not interested) but I'm finding it hard to see how the diagnosis helps with that, and they don't show the anxiety at the moment that's supposedly associated with ASD. The best help so far has been a private OT which I've had to pay for anyway since the council doesn't have any money. It may be that when they're older (they're 5 and 7) they'll need more help, but other people in my family with similar traits haven't had problems because they have had a very strong family background.

I know that a lot of people here have felt that the label has been very beneficial, and maybe I'll come to agree, I don't know, but I thought I'd give an alternative point of view.

OhToBeABuddha · 31/01/2012 22:09

I'm not terrified of a dx, I already have one from a private paed. I'm accepting of the dx. What I'm concerned about is people Who don't understand the dx, acting on it. Does that make sense? I have read some awful stuff on mn from posters including teachers about SN...

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OhToBeABuddha · 31/01/2012 22:11

I guess I'll just keep it discreet until I feel it's going to help him. I just wish professionals tried harder to educate themselves about Asd.

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OhToBeABuddha · 31/01/2012 22:23

Maybe I'm just anti NHS right now. They weren't interested 9 months ago when I really needed support and advice. Wait and see approach. Now that I've for a private dx and initiated help for ds, thy want to dx him bit still can offer any support... Wtf? Ok, I know I need them for the future with regards to dealing with school etc but they are effectively pointless to ds right now and don't listen to a word I say, insist on patronising me. Today I got the classic line... He's sti your ds and that won't change no matter if he has a dx or not. Yes I'm fully aware of that and I've long come to terms with SN mainly due to this board. But how about they stop counselling me and actually help DS... Oh no, that's too expensive....

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OhToBeABuddha · 31/01/2012 22:26

Plus the reports they are basing the assessment on we're done in August. He's a different boy now, the assessment is completely out of date, but they don't care...

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OhToBeABuddha · 31/01/2012 22:29

I guess you can see why my nick name is OhToBeABuddha, not sure I realised I was capable of such a rant, sorry.

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