Here some suggested organisations that offer expert advice on SN.

What does diagnosis achieve?

(52 Posts)
zzzzz Sat 05-Jan-13 10:16:11

For those of you that have children with sn or sn yourselves, can I ask how dx has helped or hindered your lives?

I have 2 dc with sn, one with dx one without. In our situation the un dx'd child has far more needs, requiring every aspect of his life to be differentiated for. Sometimes I am fine with not having dx, sometimes very positive and sometimes it worries me, really really worries me.

I'd love to hear what you feel dx or lack of dx has really achieved for you and your family, emotionally, socially, academically, financially, in gaining access to services and being refused access to things.

sickofsocalledexperts Sat 05-Jan-13 10:25:48

Zzzz - someone much further along than I says that a diagnosis and a record of SN services is pretty crucial when it comes to getting adult care/respite. Specifically, apparently, it is a good thing to have been on SS radar as that's the dept which takes over at 18, or post-education.

Diagnosis has been totally crucial to me, in getting my son a halfway decent education. I know that nowadays people without a diagnosis, or with a vaguer one, are struggling to get statements, DLA etc, as the cost-cutting environment means they are finding more and more excuses to say no.

I know you HE so this may not all be relevant.

Anna85 Sat 05-Jan-13 10:33:02

I found getting my DS's diagnosis meant all the people that thought his behaviour was down to parenting was shown that I was right and that there was more to it then parenting!! For ages I was always told "oh he is a boy he is just being naughty, you must be stricter" or "have you tried this parenting tactic" etc!!

Not only that but gave me answers and why he would behave in certain ways. I found once we had a diagnosis I could relax a little and relate a bit more!

Also like many will say a diagnosis will help with stuff like DLA (although not crucial I don't think), Request for Statutory Assessment etc!

Ineedmorepatience Sat 05-Jan-13 11:00:54

For me getting a diagnosis for Dd3 means that I have a better understanding of why she is who she is and I am a more comfortable, confident parent.

The diagnosis has meant that she is getting some good support at school.

I think because she is high functioning, most people have very high expectations of her and now I can say, hang on, she may not be able to handle that because she has ASD or I can help people to support her so that she can handle stuff.

Also joining an asd specific support group has really helped me and her to a degree and I dont think I would have done that without a diagnosis because I would have always been doubting myself. Iyswim

Xmasexclusion Sat 05-Jan-13 11:04:57

After years of struggling at school and being labelled 'the naughty boy' his difficulties are now getting recognised and understood. He can now be given access to the right specialist setting which will make a big difference to his life, and ours.

ArthurPewty Sat 05-Jan-13 11:23:24

Message withdrawn at poster's request.

zzzzz Sat 05-Jan-13 13:05:24

Thank you all. I know so few people who understand this sort of thing.

Ds is homeschooled so I think from that point of view it makes little difference. I hope he will continue living with us when older, but obviously that is very dependents on weather we can cope and he would be happy. At the moment he is so far from any kind of independence I can't imagine him liking away from us, but who knows.

For most people ds is obviously disabled (language disordered) but we went to A&E with a bump last term and had first the most fabulous nurse, who "got" him totally and had him eating out of the palm of his hand and then the most dreadful Dr.

The Dr was unable to deal with ds who went from smiley chatting to rigid non-cooperation in the space of a few mins.. It was clear Dr had read HE ASDish but no dx and decided hippy Mum with indulged child. He never even got that ds had limited language because ds just repeated "no I want xxxx" in response to everything.

I feel suddenly very scared about what would happen if Dh and I died, or if ds was lost somehow and found by police etc. If he does get some semblance of independence and is mistakenly arrested.

I don't know I feel freaked out.

I think DSM V would make diagnosis slightly easier for us ( having read it on-line) but I am not sure about the ramifications. IYKWIM. There is no question from us school or pead that there is a sn, so we are not "in denial" and they see the issues. Ds had 1.1 TA when he was at school.

I know you can't emigrate to lots of places with many dx, and I also know work visas are affected. I know health insurance and holiday insurance are effected.

I don't know that it would give better insight to ds as we get each other anyway and I read books about many conditions and gannet what I can.

Would dx give him an identity? Would it help his siblings?

Dh thinks I am borrowing trouble. Which is not totally unfounded. We have lived a very stressful dramatic decade or two and perhaps things are quieter this year so I am looking for angst?

Nigel1 Sat 05-Jan-13 15:20:30

The key to special educational needs support is being able to justify to the satisfaction of a gatekeeper to the local authority/NHS purse as to why exactly that child requires more support than other children of a similar age.

The only effective way to do that is to have clear diagnoses which spells out exactly what is wrong with the child (his needs); how those needs should be met (the objectives) and what additional support is needed to meet those needs and objectives.

To put it crudely "points make prizes" where the "points" are diagnoses.

My very firm advice would be always to ensure that a child has very clear diagnoses: what you do about the diagnoses is a matter for you but if something happens which is unexpected, then you do not have too worry about getting the diagnosis before dealing with the matters at hand.

I am aware that this sounds very cynical and it may be far more bluntly put than many people would say on this forum. But I have been involved in its area for some 20 years and the above is the distillation of that experience.

I hope that it is not taken as being offensive, or upsetting.

zzzzz Sat 05-Jan-13 15:35:12

I didn't find anything objectionable in your post nigel

Ds's educational needs are met at home so the gatekeeper has been sidestepped grin.

Clear diagnosis will be difficult, however "innaccurate working diagnosis" is probably achievable, but will it help?

PolterGoose Sat 05-Jan-13 15:41:31

For me, diagnosis bought recognition that ds's difference, difficulties and behavioural problems were not a result of me being a crap parent, it gives me the confidence to assert his needs in a way that was very difficult before dx, as well as the confidence to do things differently. I still have difficulties with others because ds is so articulate and people assume that having such a mastery of language must mean he can also understand and behave in ways that he can't. If he wasn't dx'ed it would be far harder to explain the discrepancies in his development.

The biggest benefit it for ds himself, that he has a reason for being different (well... as far as he is concerned he is quite normal, it is everyone else who is weird and idiotic grin) he has really enjoyed being read and reading books about Aspergers, he revels in his talents and we push these as being very much linked to the Aspergers because it is important not to only link the AS to the negative stuff.

In reality, dx has brought barely anything in terms of resources, it meant school finally got him some extra help under SA+, but everything else has been me having to find out and do stuff. We'd have got the OT and physio input without dx based on his needs anyway. We can, in theory, take part in the autism outreach activities but ds really struggles with other children's behaviours so that just ends up making him angry. In his view other children should definitely be seen and not heard confused

Another potential advantage is that if you go out to work it is easier to benefit from the protections of the Equalities Act if a dc has a dx.

HotheadPaisan Sat 05-Jan-13 15:46:52

For me the personal value was in the comprehensive report, it really helped me to understand what the problems are. We do need help and support too and I don't think we'd even be considered with the diagnosis.

In years to come I think it will help DS1 to understand why he thinks and feels as he does. He may want to make contact with others like him.

At the time I just needed to know what was going on, it was such a puzzle.

Am very interested in language/ processing disorders, DS1 speaks well but I'm not sure he understands all that is said to him. Not sure whether to go back to a SALT or what could be done about it.

PoshCat Sat 05-Jan-13 15:53:49

Our did has developmental delay and severe speech delay. Our paed tells us this is her diagnosis but the school seem to be implying it's not enough of a diagnosis for a statement. Very confusing.

MovingOnNow Sat 05-Jan-13 16:05:15

Hi, I am hoping for diagnosis early Feb. I will let you know! What I am hoping is that it will give me clarity and courage! I was initially in denial about my son and hoped upon hope that the issues would go away. They didn't. We had him referred earlier this year and now hopefully we will know soon. I need to know, with medical back up exactly what the issues are. I am not expecting anyone to wave a magic wand or offer me solutions, but I will push for other referrals. If I not get, I will pay but if I am going to start paying for services I need to be sure of the starting point. If I find myself in awkward situations, I can explain in simple terms what the issue is, instead of waffling and skirting around the issue. With close family and friends I can confirm the diagnosis and then they have a choice, get over it or don't come round. I can look for friends who are in the same situation. I can explain properly to my older son exactly why things are the way things are and look for ways to make things better for him. When a behaviour is presented to me as failure by school, I can explain why, I can share research I have done confidently with his TA and teacher and look for solutions without feeling defensive. If I need to change schools, I can look for one that understands his needs. If things get hard when he is older, and I praying they don't, I can ask for help. When people blank me, stare or talk about my child, I can console myself that they are extremely ignorant and not feel upset.

Are you getting just how much I want a diagnosis?! I say go for it. I was having sleepless nights speculating about what could be wrong with him, that was what set me on the road to diagnosis.

zzzzz Sat 05-Jan-13 16:09:23

hothead I found this book very useful in assessing where ds was, and also the progression of language ability. It's expensive but several years worth of work. They may be able to get for you through the library. It has assessment and then exercises all of which you score to see progress. smile

zzzzz Sat 05-Jan-13 16:10:54

Posh cat our youngest ds has a delayed speech & language disorder. No actual diagnosis despite input from the Nuffield; a Specialist Hospital in SALT & related disorders.

I have been pondering your same question following a recent visit; we left leaving with more problems & unanswered questions again!!!!

However unlike your school, our school have been very supportive of statement process. Ed psych, School, SALT, Paed all agree he requires extra support to benefit from curriculum. Just waiting for initial draft. I requested the statement myself in the summer hols before he started reception in September. All professionals started their assessments in Sept / Oct. Fingers crossed 1:1 support will b starting very soon just worried about how much SALT they will be prepared to pay for, would also like art therapy but don't want to request too much in case they say he shouldn't be in mainstream or it delays the 1:1 support ...

zzzzz Sat 05-Jan-13 16:35:46

MS is the cheapest option for them.

Walter4 Sat 05-Jan-13 17:57:48

For me diagnosis made me feel I could treat my asd/PDA son as I knew he need without feeling I was a bad mother. It still doesn't stop people thinking he's badly behaved/spoilt/in need of discipline....but now they keep it to themselves!

Prior to his diagnosis, I was struggling, both of us veering from tradional parenting to PDA methods as we doubted ourselves and each other. It was not a good place to be for any of us. Our son was worsening and becoming more anxious and our relationship was faultering. Once we had a diagnosis, in which our parenting of our very complex child was PRAISED!! We pulled together, relaxed our demands and things improved. Teachers listened and family agreed with us, we began to move forward.

I don't know how this will affect his life in the future, but had we continued down the path we were going , all our lives would have been worse. I will explain his diagnosis to him when he's older and hope it will give him an understanding of himself. I believe this is what will be the most help to him in life, to know why he reacts the way he does to situations and demands.

I am so proud of him, he is funny, very bright, loving and beautiful. This is part of him but so is PDA .

hazeyjane Sat 05-Jan-13 19:11:08

Ds has a 'probable diagnosis' in that his geneticist and paed feel his various issues have a genetic cause, and he is part of a study into a specific genetic condition for which he has a lot of 'markers'.

On a personal level, it helps to even have this probable diagnosis, because it gives me some sort of vague idea of what the future may hold (I know that is always an unknown factor), because although the condition is very rare, there are other children and young adults with a diagnosis. It helps to feel part of a group, not sure why. It also helps to be able to say something more definite than 'developmental/speech delay' - which usually elicits responses like 'they all catch up on the end', 'well Einstein didn't speak until he was 3' and 'my uncles, cousins older brother walked at 4, but boys are lazier, you know' etc etc

On a practical level, I am assuming it may help with things like dla renewal and statementing. Ds's early years support worker has asked for a very specific letter from the geneticist, because she feels it will be integral to the statement meeting at end of January.

PoshCat Sat 05-Jan-13 21:45:59

momma, it's not that the school are not being helpful. DD (aged 4) has 16 hrs a week 1:1 and daily speech therapy with a member of staff but at the moment she is on Action+ and if she continues to need this level of support or more long term then the school have indicated she'll need a
Statement.
They have strongly implied that a more solid diagnosis would help with the process. The school SALT has hinted at ASD whilst the paed has stated when I suggested it that she wasn't about to label a child wrongly with anything to keep the school happy.
And so it goes on...

zzzzz Sat 05-Jan-13 22:19:07

posh the SALT shouldn't be hinting at anything. She should be doing a thorough assessment of her Speach and language which is used as contributing evidence towards ASD. Be aware that in some areas a dx of ASD will mean no more SALT (this is the case in my area), it may be that your consultant is being cagey to get SALT for as long as possible.

Dx shouldn't be linked to support, it is supposed to be based on demonstrated need (not a quote my interpretation). Your working dx, should be more than enough for supporting evidence, but school need to show need fo the statement.

I find the blurring of education and medical really worrying, and agree they shouldn't be pushing dx.shock

That said you are exactly where we were 3 years ago and we are no closer to clarity as to what is up. We are however making huge developmental strides, so I don hink it matters on ha front for us.

MovingOnNow Sat 05-Jan-13 22:27:13

Out of interest, why does an ASD diagnosis mean no speech therapy? I have been looking at private speech therapists. My son had therapy when he was 3 , which was pointless as he wouldn't engage at all. I think he would benefit now and am thinking of going private.

zzzzz Sat 05-Jan-13 22:40:28

I don't know why ASD=no SALT, it seems nutty to me. Absolutely indefensible, but here ASD comes under a different group IYKWIM.

We have never really had input from either on NHS but had very good private SALT at home(NHS SALT went into school a couple of times).

Things may have changed now as we have a new diagnostic pathway which is supposed to be swooping everyone towards the right therapists.

We shall see.

Handywoman Sat 05-Jan-13 22:44:44

zzzzz I don't think there's anything wrong with SALT hinting as long as they are clear that the diagnosis is outwith their remit. After all, many SALTs work with ASD kids and it IS within their remit to recommend further assessments/referrals. My private SALT has done this and she is very clear on her role in all this ie totally unable to diagnose, merely to support my dd's development and maximise support.

Movingon Private SALT is absolutely the best thing we ever did for dd2 (history of severe language delay and ?ASD). Expensive but transformative and quite beyond anything the NHS could offer.

I'm not sure whether the ASD=no SALT varies by locality. Where I am it doesn't seem to be the case.

HW xxxxx

zzzzz Sat 05-Jan-13 23:01:14

Private SALT was brilliant for us too. She helped ds enormously and offered me wonderful support and insight.

I don't think hinting at possible diagnostic outcome is a good thing. The process works because each specialist gives their input and expertise on their area and then the whole picture leads to diagnosis. Jumping to the end of the process without taking all parts into account isn't a great idea IMO.

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