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Given two diagnosis, which one is correct?

(31 Posts)
shey Wed 25-May-05 18:21:14

What do you do when you have had two proffesionals give you two different diagnosis and insist that theirs is correct. We have had a Severe Speech and Language delay diagnosis and an asd diagnosis. I know that the therapy overlaps but it is confusing and we really can't afford to have a third assessment done.

Jayzmummy Wed 25-May-05 18:47:23

Maybe they are both right. J has Semantic Pragmatic Disorder and delayed speech and also has a dx of Autism. So long as all the childs needs are being met and you are happy with the support your child receives then does it really matter what label they give your child?

I know what its like to chase a dx and TBH I probably exhausted myself in doing so. Focussing on the help that J needs and ensuring he gets it regardless of the labels is far more productive for us as a family.

JakB Wed 25-May-05 18:49:39

shey, my DD has had various descriptions of her difficulties ranging from 'classical autism with associated speech disorder' to 'severe autism with severe learning difficulties' to just 'classical autism'. It sounds as if your child may be on the autistic spectrum AND have severe language delay (and the two obviously go hand in hand) although as I understand it the development of language in children with autism is not only delayed but also disordered (for instance, my DD got some single words but rarely used them appropriately [infact, only once, when she said 'more' in context!], used them repetitively as a sort of vocal 'stim' and then stopped saying them altogether). How old is your child?

shey Wed 25-May-05 19:23:48

My ds is 3.6. He says no perfectly but otherwise just some bits of words.

shey Wed 25-May-05 20:09:12

We can't understand why people cannot say there is an overlap but instead insist their view is correct. Can anyone tell me a little bit about prognosis for asd?

coppertop Wed 25-May-05 20:32:57

Ds1's language was delayed but not really all that disordered when it finally started. He still has a lot of language 'quirks' though. Ds2's language wasn't all that delayed but IMHO it is far more disordered.

What do you mean by prognosis, Shey? (Or am I being thick yet again? )

JakB Wed 25-May-05 20:37:00

What is your little boy like otherwise, Shey? In terms of none-verbal communication, playskills etc etc? And what do you mean by prognosis?!

shey Wed 25-May-05 21:21:27

I don't know what I mean by prognosis!! I think I need to find someone who tell me where their child is at after having been diagnosed ads/sppech and language delay. I have pretty much been tking one day at a time and not looking too far ahead but now I think I have to move that way.
His non-verbal communication is very good. Play skills are a bit immature. Thanks for the replies.

shey Wed 25-May-05 21:22:16

Soory about typing errors.shattered!!

Jimjams Wed 25-May-05 21:36:51

TBH I think its impossible to tell shey. At just short of 3 my son was diagnosed with "mild langauge delay", at 6 he's non-vebral and has a dx of "a communication disorder on the autistic spectrum at the more severe end" or something like that. he hasn't done as well as we hoped. But i know other children who had far more damming dx at 2 who have well and truly outstripped him.

Davros Wed 25-May-05 22:00:42

Shey, if I were you I'd choose to use the ASD dx ongoing, it is better accepted and understood and just more tangible. It may well help with getting therapies etc too and, if someone has given that dx then its fine to use it. Don't waste time and money on more dxs now.

coppertop Wed 25-May-05 22:40:51

It really does depend on the child. At 2.5yrs old I would have said that my ds1 was probably moderate ASD. No language, no communication, no play skills etc. At almost 5yrs he's at the mild end of the spectrum and doing well in a mainstream school. For other children there can be a completely different outcome.

shey Wed 25-May-05 23:00:42

another question, (perhaps I should start a new thread)what about ads and mainstream school, is that the best bet or should we look at special schools for speech/language or ads?

coppertop Thu 26-May-05 10:37:12

Again, so much depends on the child. My ds1 is in a mainstream school and his teacher is pleased with his progress. He is on School Action Plus and it looks as though he's not going to need a statement - although obviously that could change. I suspect my ds2 will also do well in a mainstream school. For other children this may be an unsuitable environment and a unit or a special school may be far better for their particular needs.

JakB Thu 26-May-05 11:13:53

Shey, they are reticent to say which kind of schooling is suitable unless it's glaringly obvious, IME. You will know more next year when they will start talking about school placements?
Have you got a nursery for children with special needs in your area? In our borough many children with difficulties get picked up by this the pre-school year

shey Thu 26-May-05 18:08:59

no special needs nursery that I know about. We seem to be being guided towards mainstream school with a support assisstant.

mogwai Sat 28-May-05 20:36:55

sorry, but to go back to your original question, two professionals should not argue that their diagnosis is exclusively "right". Many original diagnoses change over time and there is often overlap, as the experienced mums here are saying.

As a professional, I will always take on board others' opinions and the opinion of the parents. I agree that the ASD diagnosis might be more "helpful" to you in the immediate term, if it's a diagnosis you want. I always prefer a "description" of the individual child, with pointers to specific disorders where relevant. And yes, the LEA will be reticient to name a particular sort of school at this point.

Jimjams Sat 28-May-05 20:40:04

When we saw the clinical psych she said she used to give a description for young children, but stopped doing that in favour of giving a firm dx when she found that the description didn't allow the child to access any services, whereas a dx did.

Who gave the diagnosis shey? A developmental paeds carries the most weight, followed by a clinical psych. Other professionals shouldn't really dx (and if they doo you'll find its questioned and not really "worth much").

shey Mon 30-May-05 13:25:26

The two speech and language delay DX came from a neurologiacel developmental paed and a ed psych and the ASD from a community paed.

mogwai Tue 31-May-05 01:48:27

why shouldn't other professionals diagnose? I'm an SLT, diagnosis is a HUGE part of my job. I always understood that a diagnosis of ASD should be a three-way diagnosis between paediatrician, SLT and Ed Psych.

In practice, the three professions make their judgements independently because they do not usually work in the same location. The Paediatrician's diagnosis is usually "taken more seriously" because he/she "is a doctor", but I've seen many examples of wrong diagnoses by paeds and I've had many children who I've insisted were on the autistic spectrum, when the paed has refused to commit to the diagnosis. Sometimes you are very sure of the diagnosis and of the benefits that diagnosis would bring to the family - other parents plainly don't want to hear the ASD "tag" (or aren't ready for it at that stage). It's a delicate thing to get right, but very much part of the professional's role to do so. I think involving parents in disputes over diagnosis is very unhelpful.

Jayzmummy Tue 31-May-05 01:57:09

Mogwai, Our SALT was the first to acknowledge and take on board our concerns. The Paed refused to give a DX (and 3 years later is still refusing to give a confirmed DX) even though the EP and SALT have both said without any doubt J has Autism.

Im not interested in anything he has to say now.....I discuss my concerns with the SALT and TBH she has given us more support and constructive advice than the silly fool ever could.

mogwai Wed 01-Jun-05 19:03:53

it's bad that you have to go through this - you need to be able to rely on all the professionals involved. Perhaps other professionals know that he's a silly fool and try to bypass him where possible? I worked with a paediatrician who stood in my way so many times I just worked out how to get around her. She didn't like me for it, but I didn't give a monkeys!!

Davros Wed 01-Jun-05 21:19:47

I think that LEAs and the Benefits system prefer (want?) a dx from a Paediatrician, which would be in consultation with SLT and other professionals.
I also strongly disapprove of professionals deciding whether a parent is "ready" to hear a dx or not, if its correct then it is so. Of course they need to be sensitive and try to give sources of support and information which is what is mostly lacking.

Jimjams Thu 02-Jun-05 07:54:00

The problem with other professionals diagnosing is that LEA's and SS don't count it. They will accept a dx from a paediatrician, and usually from a clinical pysch. They will give some weight to dx from an ed psych, but not if you are asking them for services they don't want to provide. They don't count a stand alone dx from a SALT.

DS1 had a multi-disciplinary dx from a team working toigether which is the best way tbh (just hard to accesss multi-discipliniary teams).

mogwai Thu 02-Jun-05 09:53:10

sorry Davros, I don't agree, though accept that this may be the case for you personally. Part of the skill of being a professional is knowing when a parent is ready to hear a diagnosis. I am also a very direct person and would prefer information up front, but this doesn't apply to everyone.

As a newly qualified therapist I made the mistake of thinking that everyone wanted to hear a diagnosis as soon as it is made, but I soon learnt this wasn't the case, either through immediate reaction or through feedback. As I progressed professionally I learnt to read the signs more carefully and listen to what the parent was saying more carefully.

I recently handled a case of a lady who had been told her son was on the autistic spectrum 12 months ago. She had refused to accept the diagnosis, fought the professionals involved and generally suffered a lot of heartache. When she came to see me, we discussed the autistic continuum in greater depth (I probably had more time to do this than anyone else she had seen) and she seemed to accept the diagnosis for the first time. She later told me that her coming to accept this was a two fold process - firstly she hadn't been ready to hear the diagnosis twelve months ago, and secondly she didn't feel it had been handled well at the time and she hadn't been given all the information or time to discuss.

I strongly think that, even if the paediatrician had spent all day with this lady twelve months ago, handled it beautifully, she would not have been ready to accept the diagnosis at that point. It might equally not have taken her twelve months to come to that point, but that was how it was for her.

People are so diverse and I hope that some of us professionals allow for that when we are dealing with parents.

Of course, it goes without saying that any parent who asked me directly for a diagnosis would be given a very honest answer - it's their information, they own it, not me, so I'm not suggesting that information should be witheld in some sort of patronising way.

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