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.

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.

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

Message withdrawn at poster's request.

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

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

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.

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.

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...

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'.

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.

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.

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...

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.

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 23:08:28

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

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!

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!

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

Sorry for lack of commas!!

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.

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 22:25:37

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.

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.

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.

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.

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.

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!

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

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now