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
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.

Handywoman Sun 06-Jan-13 01:59:45

Yes I agree that hinting at an assessment outcome is not appropriate. I had that from dd2's nursery teacher. Four years down the line they might be proved right(!) but I was still not impressed at the time.

HW xxxx

HotheadPaisan Sun 06-Jan-13 08:28:05

Thanks for the book rec, it does look good but pricey. DS1 was discharged from SALT immediately following ASD diagnosis, I am kicking myself for allowing that to happen. He clearly has processing problems but I'm not sure how to get those assessed.

mariammama Sun 06-Jan-13 09:53:25

The line between hinting or guessing at diagnosis, and being professional within a slow system is fuzzy though.

Saying "I'm not a doctor, however, SLT-wise/ educationally / behaviourally etc your child's needs are broadly similar to those we see in dc with ASD" is surely a polite way of saying 'Bet £5 he has ASD'. And experts ought to share (carefully considered) opinions

bigbluebus Sun 06-Jan-13 10:57:07

DD was diagnosed shortly after birth. She clearly had features of a chromosome disorder. Many of her peers who we subsequently met at a SN playgroup at the Child Development Centre did not and still do not have an official diagnosis/label. DD is now 18 and many of this peer group have gone through special needs schooling with her. So I think the answer depends on the level and severity of the individuals needs. These young people have now passed over into adult services for social and health care and are still having their needs met by the system in a similar way - and in some ways better - than they were in childrens services.
DS (16) was diagnosed with HF ASD at 6. For him, I am convinced it was the difference between getting a statement and not getting one. He is academically very able and was and still is in top groups/sets for every subject. However his ability to focus and behave appropriately meant that without the statement that brought him 1:1 support, the education system would have failed him. He has never had any input from Social Care in childrens services as he has no Learning Disability so does not qualify and so I doubt he will even get on the radar of Adult Social Services when he turns 18, although he is very able, he is extremely unmotivated to do most basic tasks without someone 'on his case' , so who knows how he will get on once he leaves home. I don't think his diagnosis will help him at all once he leaves the education system - in fact it may even hinder him!

zzzzz Sun 06-Jan-13 15:17:32

Thank you all so much for sharing your thoughts and experiences. It really helps to have something to help me wade through it all.

I suppose part of the problem is that ds is severely effected, but having no dx seems to imply to many people that his issues are mild. It's good to hear there are individuals who go through ss without dx. I don't feel quite so weird.

Sally200 Mon 07-Jan-13 12:28:29

Think I may be alone on this, but I have decided not to get ds assessed. He is 5 years old, probably Asperges, he has sensory issues too. He started school in September. He has a statement of 22 hours per week - this was put in place before him starting and without a diagnosis. SALT go in to see him every half term. He has the most wonderful TA.
For us, it makes no difference what you call it, ds is our ds - having a name for his difficulties would not change anything. He has the help he needs.
We thought alot about the future and what a diagnosis/label would mean - it could effect his life detrimentally - such as VISa apps, mortgage applications, jobs etc - we decided that we did not want to place any limitations on him.
I think every case is different, if ds was not getting the help he needs then perhaps we would have to have had him diagnosed. But, because he is, its not for him, or us.

PolterGoose Mon 07-Jan-13 17:14:57

I understand what you are saying Sally, but I do take issue with your statement "For us, it makes no difference what you call it, ds is our ds..." Because my ds, who does have a dx (not a label, I find the idea of a label quite offensive, we wouldn't call most disabilities a label would we?) is still my ds, his dx is exactly that, a shorthand way of saying he exhibits a particular range of symptoms that can be codified as Aspergers.

Your ds is still quite little, and you may change your view as he gets older and becomes more aware and more curious about his differences, I hope you will be open to exploring a dx if the situation changes. My understanding from parents of older children and teens is that dx makes a significant and positive difference.

I am not being critical, it is if course your choice.

mariammama Tue 08-Jan-13 22:07:24

ASD diagnosis requires two things: significant impairments across the 'triad' and that these cause significant problems in daily life. Ds1has a friend whose ADOS score was way higher than DS1's. But because his issues cause much less 'difficulty' in everyday life, the consultant decided to hold diagnosis until/ unless it's troublesome.

Just a thought.

PoshCat Tue 08-Jan-13 22:25:37

I can only see the benefit of a diagnosis if it provides more specialist help and support.
If DD can have this without a diagnosis that would be preferable. Doesn't everyone feel like this? There's nothing positive about a label.

MovingOnNow Tue 08-Jan-13 22:36:35

Poshcat, I'm not sure I agree. A year ago I was against pursuing a label but the SALT recommended I have him referred to comm paed. I held out for a bit after discussing with HV but when the SALT made the same recommendation again I felt unable to ignore it. Also my imagination began to run wild and I was imagining all sorts of illnesses in him and fear that I was just a totally crap parent, even though I have an older child and everything is fine. I really resisted the label but life has got too hard without one. Maybe it's down to how brave you are? I should trust my own instincts but I don't anymore, I need peace of mind and a way forward. I really do admire the op for the wy she has made her own judgement and HE'd etc. For me, once/if I have a diagnosis, I can start to get my ducks in a row.

PoshCat Tue 08-Jan-13 22:41:28

Moving, you may well be right. DD is only 4. It could well be that as she grows further down the line a diagnosis may help.
Keeping an open mind for now.

PoshCat Tue 08-Jan-13 22:45:05

Sorry for lack of commas!!

MovingOnNow Tue 08-Jan-13 22:50:27

I don't blame you, that's exactly where I was. I was a bit in denial about my son, but his issues didn't really take off til he started school. I genuinely thought he was speech delayed and a stroppy monkey! When I look back though, clues were there. In hindsight, I wonder why no one suggested statutory assessment to me back then. I knew so little I thought you only got a statement with diagnosis, so I didn't push hard for support, because of my own guilt about no dx. Once we started the ball rolling for dx, school suggested SA but at that stage indicated that diagnosis was less important than need. So I am cross really, as my son stayed pt for most of Foundation year. I will never really know if my own denial played a part in it or whether they just strung it out til he was a bit bigger. I see parents with children with fewer needs than mine, pushing aggressively for support and can only conclude I have been a it of a wimp!

MovingOnNow Tue 08-Jan-13 22:56:56

Ps. I have just reread some of this thread and I think sometimes it is okay if a professional does hint at ASD. No one ever did with my child in nursery, though I think suspicions were forming in my head. When he started school a senior member of staff hinted in a round about way and it was like full body blow to me, not that you would have known from my reaction. But, once I had revisited his nursery, the manager did admit she thought he had traits but it was never mentioned to me. If no one comes out and suggests it, how the hell does the parent know if they have no knowledge. It's all a minefield!

PoshCat Tue 08-Jan-13 23:08:28

I see what you mean. I think many people feel strongly though that only a trained medic can diagnose.
In our case it's even more of a minefield as our paed has said more than once, (I keep asking her because of the SALT's comments) that DD doesn't have enough traits.

On the flip side the SALT reports are full of comments referring poor eye contact, repetitive behaviours, spinning and manic laughter. Some stuff we have never witnessed at home. confused

HotheadPaisan Tue 08-Jan-13 23:15:12

There's nothing negative about a label either, a diagnosis is neutral, it's how some people treat that informatiom that is a problem.

Neurological and developmental disorders are facts, they help parents and their DC understand what is going on and why, they are not labels.

PoshCat Tue 08-Jan-13 23:24:57

Perhaps I've just googled far too much and read between the lines.
There's not much I haven't read about speech delays, disorders, ASD and GDD. Have now decided to stop all that and to focus on researching therapies proven to help a child with severe speech delay/disorder who may or may not have an ASD. Trying to diagnose my DD when the "professionals"cannot is getting me nowhere.

blackeyedsusan Wed 09-Jan-13 00:24:53

i'm with anna85... although i may not have got a lot of comments about paenting, i could feel the comments... oozing thrrough my skin as those dagger eyes stare at you in the supermarket...

zzzzz Wed 09-Jan-13 01:00:05

I don't think diagnosis is in itself negative or positive. I think there are huge pros and cons (google "diagnosis PO and cons).

I do think sometimes that it can limit expectations, be used a way of excluding from activities/therapies (eg SALT).

I think it can also allow a level of generalisation that is unhelpful (eg "they are all visual learners).

I think it can limit opportunities in the form of schools, visas, driving etc, that actually may be within the capabilities of some with a particular dx.

I am a little freaked out by reading on claws thread that LEA have responsibility to ensure education of children with sn. I believe that to be a parental resonsibility and am shock that your dx or even un-dxed sn removes that responsibility from parents to state. How is that fair or just?

I'm also not entirely comfortable that the psychological impact of defining oneself as a dx is always healthy. I think it is a hard line to walk

On the other hand I can see that It can protect the vulnerable.

There is solace in knowing things are harder for you.

It is easier to find people in a similar situation.

It gives you some idea where you are heading.

It is useful to have a shorthand rather than dissect your child with every judgey panted idiot.

For me the worst thing about not having a dx is people assuming either "it's not that bad if they haven't given you a dx", or that you are in denial and don't accept your child.

The best thing about not having a dx is that I am constantly looking at who ds is and what will help him now, and every professional at least briefly looks at him not his dx. There is no plan to follow, we are on a journey together that could lead anywhere grin.

moving thank you for saying I am brave. blush. As he has been home for longer, I don't need to be so brave because it is so obviously a good thing for us all. But the beginning was a bit scary.

Ultimately we look after these children so the decision must fit your own family.

HotheadPaisan Wed 09-Jan-13 07:37:36

I understand that too, but I do all the things you both mention even with a diagnosis, and I think a lot of people who meet DS1 quickly adjust their expectations too as although it's obvious he has difficulties, it's not obvious why.

Anyway, it's a sensitive area, it all is what it is and everyone just gets on with it the best they can however they can.

I am grateful to have seen Daphne Keen, her six-page report gave me the understanding I needed of what the problems are and why. The actuall banner it comes under is a blunt instrument and needs far more nuance but it will have to do for now.

Medical and social models of disability aside, and despite issues with the obsession of naming and categorising everyone and everything, there is nothing instrinsically negative about knowing and understanding how things are and naming that.

I don't necessarily want a world where we don't do this, but of course I'd prefer it if it mattered less, diversity was celebrated and people were automatically helped with whatever difficulties they had.

HotheadPaisan Wed 09-Jan-13 07:41:55

And there are plenty of people who find it absolutely psychologically positive to define themselves 'as a diagnosis'.

PolterGoose Wed 09-Jan-13 08:23:41

Well said, Hothead grin

I also agree with moving's recognition of your braveness, zzzzz, and your posts always make me think and question my own opinions, which is good grin

It is hard to think of a comparable physiological condition that can be compared with getting a diagnosis for a neuro-developmental condition. Maybe migraine can be used, I've known people with a range of varying symptoms (headache, visual disturbance, nausea etc) seek help from the medics because the physical symptoms are affecting their quality of life. When they get dx with migraine there may be no single treatment and they will probably be advised to try a plethora of treatments from a 'list' of treatments that have in the past helped people with similar symptoms. They may try all the usual stuff and then try alternative therapies or be referred for more specialist help when all else fails. They will listen to the stories of others an how they manage their migraines. And, despite all the different ways that migraines present, when someone tells you they suffer with migraines you have a sort of idea of what they're talking about, they don't need to describe every symptom and every way in which it affects their lives to enable understanding and empathy? Migraine is just a shorthand for a range of symptoms, no two people's migraines are alike and each individual's migraines will change through their life. It is all a bit like what we go through isn't it? Yet, we have no worries getting a diagnosis for physiological problems that impact on our lives...

MovingOnNow Wed 09-Jan-13 09:17:49

Aw zzzz, yes I do think you are brave! I also appreciate some of the ideas you have given on here. For me, I want to be more proactive and that is why I need the diagnosis. I don't want to be a big victim mum of an autistic kid waiting for everyone else to make it better for me (not saying that anyone else is I must stress). I just need that confirmation. I have a gazillion ideas about how to make life better for us all (particularly my older child who I feel has been short changed lately) and how I can find ways to help my special little boy. But I need to be able to say, yes this is the problem. With school, I want to be more assertive and actually more helpful to them. I read and see information that could aid them, I am happy to do the research for them if they don't have time to do it themselves, but again I need to be able to say this is the diagnosis first. This is a major breakthrough for me, I spent a good six months studiously not looking at anything to do with autism. Of course, there's the possibility they will say he is not ASD. I will eat my hat if they do, but again I can say okay, it's not this, but these are the issues. It is a confidence thing for me now. If I am honest, I am expecting diddly squat from the NHS! And I am realistic about what school can achieve, but I want to be able to challenge them and hopefully help them too.

MovingOnNow Wed 09-Jan-13 09:19:18

ps. Also, when women in my local park come up to me and ask in a big booming voice, in front of loads of other people, is he autistic, I want to be able to say yes he is, now buzz off. Or, no he isn't, now buzz off. lol.

PoshCat Wed 09-Jan-13 10:07:30

Do people really come and loudly ask you? Am incredulous. That's awful. sad

imogengladhart Wed 09-Jan-13 10:38:19

Message withdrawn at poster's request.

zzzzz Wed 09-Jan-13 11:16:34

I agree that it can be positive to define yourself (in part) by your diagnosis. polts description of stressing the good parts of AS while recognising the hurdles it creates is I think very sound. But I do think that being outside the norm is very very hard, and for some a label given by a professional, will restrict not free. It depends very much on how it is handled and the personality of the child involved.

I think you can of course tailor your response to your child based wholly on observation even with a label, but I'm not sure I could and that worries me. I am influenced in how I perceive ds. One of the reason I so love the Geese is that they make me better. Interacting with school about him made it harder. Regardless of how much I tried not to be, I was influenced by their view of him.

Ds was slow to potty train. He had very little functional language at 3.5 and it impacted on getting him out of nappies. I would have said at that stage that I was his most fierce and ambitious advocate. That I treated him age appropriately as far as was possible and "saw" his intelligence clearly through his disability. One week after potty training I realised how utterly deluded I was. I viewed him entirely differently once he was in pants, I expected more, challenged more, respected more. sad. I know now that I was hideously influenced by his fat nappy bot, and leg waving nappy changing. I was treating him better (IMO) than school etc, but still falling short. Knowing this about myself and seeing evidence of it in interactions with others/allocation of resources etc I have to conclude that dx would have some negative impact. For some that will be vastly outweighed by the positives.

I too have had the "is he autistic" nonsense. My personal feeling is that unless you would discuss other medical conditions your child might have, just politely say "Not as far as I know. Why? Is your ds/dd?" , it is also very gratifying when someon talks about being "normal" to use a lot of descriptors like "average" or "run of the mill" grin when describing their little darling.

I do think there is more of a stigma with neurological dx. It is still relatively normal to use disableist language about invisible neurological conditions (I catch myself saying things are moronic and idiotic all the time and wonder is this really ok). I suspect that how useful the dx is in part dependent on how informed the person hearing it is.

I do worry about erosion of human rights, like the state in charge of educating our children thing. I worry that we are not so far from "lock up all the strange ones where they can't bother us normals" mentality. I believe vast majority of children with neurological disabilities do not recieve the education they deserve and I don't think anyone cares very much about that. I think the on going cost of that situation both financially and in human dignity is beyond stupid and shameful.

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